A miracle in the lanky shape of an 18-year-old high school senior walked into Riley Hospital for Children last month.

A miracle because Matthias Pfister might never have walked out of the hospital in the first place – five years ago when he was critically injured in an auto accident near his Danville, Indiana, home.

Matthias suffered a devastating head injury, multiple broken bones and a stroke for starters. He was comatose, literally dying, said doctors who brought him back from the brink.

The teen’s return to Riley was triumphant in ways his doctors, his therapists, even his own parents can’t truly know.

Only Matthias knows the extent of the internal and external struggles he faced hour after hour, day after day, month after month to get him here today.

He has come to Riley with his parents, Kyle and Lauren Pfister, to reunite with some of the intensive care unit team who cared for him in those early uncertain days when his life was literally in their hands and in the hands of the neurosurgery team.

“He will probably walk out of the hospital as one of the truly most amazing recoveries I have ever seen,” said former Riley neurosurgeon Dr. Jeffrey Raskin in 2020.

PICU physicians Dr. Matthew Friedman and Dr. Brian Leland are inclined to agree, but what has brought them to the lobby of Simon Family Tower five years later to see this young man – a boy of 13 when he was injured – is the chance to witness a happy ending in the flesh.

As PICU doctors, they don’t often get the chance to see their patients once they are stable enough to be moved to another unit.

“This is what we hope for,” Dr. Friedman said, as he took in the sight of a 6-1(ish) Matthias greeting him with a solid handshake and a half hug. “These are the patients we live for and train for.”

A “full-court press” is how he describes the medical intervention that saved Matthias’ life. It’s a basketball term Matthias can appreciate. The senior at Ben Davis High School manages his school’s basketball team and plays the game in a church league. He also plays golf for his school’s team and bowls.

Dr. Friedman, who saw Matthias a few months after the accident when he was still struggling to walk and talk in rehab, recalled that his patient suffered a severe traumatic brain injury, bleeding in multiple areas of the brain, a stroke and dissection of an artery in his brain.

Surgeons performed a decompressive craniectomy to remove part of his skull, repair scalp lacerations, debride the brain and stop the bleeding.

“It takes a huge team of people between the neurosurgery team and the PICU team and all of our nurses, respiratory therapists, physical therapists and rehab,” Dr. Friedman said.

So to see that same patient five years out from the crash smiling and joking with doctors and therapists on the PICU and in the inpatient rehab unit, even pointing out his old room in rehab, was a day to remember.

“To see you now is just incredible,” Dr. Friedman said. “In the ICU, so often we see kids and … get them better, but where they end up, we don’t always know, so thank you so much for coming back so we can see how awesome you’re doing. Seeing patients recover and come back and tell us they’re going to college, that’s what makes it worth it.”

“We get you to the beginning of your recovery,” agreed Dr. Leland, “but we usually don’t have the luxury of seeing what one year, three years, five years out looks like.”

It’s not just how far Matthias has come, but where he is going.

The recipient of a $20,000 college scholarship from the Kiwanis Club’s Abe Lincoln Awards, Matthias will graduate from Ben Davis this spring and has been accepted to Indiana University Indianapolis to study neuroscience. His goal is to become a vascular neurologist, focused on strokes and brain injuries like he suffered.

“My passion for neurology has grown from my accident,” he said. “I want to help other children who have experienced brain injuries like me or other defects. I just want to give them the best chance to succeed.”

His parents, who have held space for their son’s pain, as well as their own these past few years, couldn’t be prouder.

“We are so excited and really proud of him and all of his hard work,” Lauren Pfister said after the awards program in February, just days before the five-year anniversary of the crash. “It brings up a lot of emotions, but we’re just excited that we can celebrate another year with him.”

Thinking back to those critical first few days in the ICU, she remembers the fear and the desperate search for hope.

“Some tough memories and stressful days,” agreed her husband.

To be on the other side of that trauma with the hope that each new day brings is a gift that humbles them.

“Thank you so much,” the teen’s mom said to the doctors. “Thank you for being honest with us throughout the journey. You helped us get through that next minute, that next hour.”

When asked if it is hard to be reminded of the accident, Matthias is matter-of-fact: “I’m reminded of it every day, but it makes me grateful for another year.”

The one sport Matthias hasn’t been able to return to is his beloved baseball, but he could take the field again in September as a Riley First-Pitch Kid, throwing out the ceremonial first pitch at an Indianapolis Indians game.

While he has made a remarkable recovery, he still struggles to fully move his left arm and hand. His gait is mildly affected. But nothing stops him from moving forward.

“When I was here, it was all about working hard, getting better, one step at a time. Now, I’m just happy that I’m here,” he said while talking to the PICU physicians. “I’ve always had a positive attitude, so I just focused on the positive things.”

“That seems to have worked out pretty well for you,” quipped Dr. Leland, who added that he and Dr. Friedman will be glad to offer advice and encouragement as Matthias dives into the study of medicine. They even agreed to have the teen shadow them on the job down the road.

The whole ordeal has brought the family (including Matthias’ two younger siblings) closer together, Lauren Pfister said.

“You don’t take anything for granted. You spend as much time together as you can, sharing love and care for each other. You just never know what tomorrow will bring,” she said.

“The better he gets, the better we all get,” Kyle Pfister said. “We got pretty lucky overall. After Matthias woke up (in the PICU), he could not move his legs for almost a week. He promised us he would walk out of there on his own when it was time to leave, and he did just that.”

Matthias, who still sees rehab specialist Dr. Sara Cartwright at Riley, said he continues to work hard, grateful for the second chance he was given, grateful to the Riley team who didn’t give up on him.

“I want to thank them for supporting me through my journey, no matter how bad things looked at some point,” he said. “Thank you for saving my life. Hopefully, I will accomplish my dream of becoming a doctor someday.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

A horrific crash, a remarkable recovery - A 13-year-old athlete couldn’t walk or talk after a serious accident. Now nearly three months later, Matthias Pfister is inspiring his parents and his hospital care team.

Danville teen continues remarkable recovery from near-deadly accident - Matthias Pfister is not only walking again, he’s running. And he can’t wait to get back on the baseball diamond.

The sun has just come up when Sara Massy and Emma Lesage arrive at the Williams home in Mooresville.

The two therapists from the new Riley Children’s Health Early Intervention First Steps program are here to see 2-year-old Westin Williams, son of Tim and Danielle and brother to Waverly.

Like any active toddler, he is ready to play, and the Riley therapists are ready to work as they sit down on the floor to engage Westin in therapy that looks like play.

Since January, they’ve been working with Westin on developmental issues, specifically speech and fine motor skills. He was born four weeks early with a partial chromosome deletion that could affect his development, so the family was matched with First Steps, an early intervention program (ages 0 to 3) for children with delays or disabilities.

Massy, a speech-language pathologist, and Lesage, an occupational therapist, have worked in an outpatient setting before, but both now go to patients’ homes for therapy, seeing about 20 families each week.

For Westin, they frequently do combined appointments, feeding off each other’s interactions to improve a skill – whether that’s engaging him with the names of colors, imitating his delight when he scoops beads up into a toy dump truck or encouraging him as he practices early writing strokes.

"When we started in January, he wasn’t using very many words you could understand,” Massy said. “We’ve been working with him on telling mom what he wants. We made a picture board with his favorite shows and foods to help.”

In the past several weeks, the improvement has been remarkable, she said.

“He says so many things you can understand now, he’s labeling things, tells when he wants to help, asks for help. He has a lot of confidence to use his voice. A lot of times when kids know speech is hard, they are afraid to use their voice.”

But not Westin, she said.

“He is continuing with that confidence and trying to say more things. A lot of kids like him know what they want to say, but the brain is not actively sending that message to the mouth on how to say the word. We use a lot of practice and repetition, visual cues to help him figure out how to use his lips.”

Westin shows off some of his skills as he says “uh-oh,” “mess” and “I help” as he loads and unloads the tiny truck.

He displays his improved fine motor skills by picking up beads with his fingers, pulling apart plastic firefighter hats and bending his wrist to help scoop up toys.

“He loves to help with the laundry and the dishwasher,” Danielle said about her son. “He’s loved the broom since he was little. He has his own little cleaning set.”

Watching Westin play and giggle, she is grateful for the progress he has made in such a short time.

“He’s come a long way in just a few months,” said Danielle, who said she chose Riley as a First Steps provider because the family has had a relationship with the hospital since Westin’s older sister was born.

"He’s a very quick learner, very smart,” said Lesage, as she modeled different wrist motions while playing with the toys he has on hand. “For Westin, he’s so strong that he likes to manhandle things, not really trying to use those little muscles. But if you make it a fun game, he will.”

And it translates into a functional skill, like feeding himself, she said.

Rather than bringing in a bag full of toys and tools to each home, the therapists use toys already there so parents can reinforce the same lessons between visits.

“We’re trying to coach parents on techniques,” Massy said. “At the end of every session, we give them little things to work on.”

Both therapists say connecting with families and patients is much easier in a home setting, which they believe improves progress.

“It’s fun to be able to give parents the tools to be successful in their house and really be able to see that follow-through,” Lesage said. “We’ve been able to work with some amazing families.”

To learn more about this program, email rileyearlyintervention@iuhealth.org or call 317-944-4638.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Bridget Franklin bops from room to room in the pre-op area on the second floor of Simon Family Tower, checking on patients who are being prepped for surgery.

As a certified child life specialist for Riley Children’s Health, her goal is to calm fears and wipe away tears by teaching, listening and encouraging the kids in her care as they prepare to go into the operating room.

For Hadley Bender, 11, Franklin talks about the mask she will wear as the anesthesia is delivered. With Franklin’s help, Hadley has decorated her mask with stickers and used a root beer-scented lip balm on the mask to lull her to sleep.

Hadley, who is accompanied by her mom and grandma, is calm and relaxed, even though this is the first time she has had any kind of medical procedure at Riley.

“She’s a rock star with all of this,” said her mom, Megan Turner.

Down the hall, a preschooler is a little antsy as she’s getting ready for surgery, so Franklin walks with her out of the pre-op room to select a push car to distract her for a few minutes.

Franklin has a “Mary Poppins” bag filled with other items to distract – a glitter wand, squishy donut-shaped stress balls and Pop Its – as well as items to educate, including photos of the OR and cards with simplified explanations of procedures.

Her approach to patients varies, depending on their age, type of procedure and level of anxiety, but the goal is always the same – to help them understand step by step what will be happening, to answer questions and to advocate for them.

It’s a job that Franklin dearly loves in a place that holds special significance for her. Her brother was treated for a brain tumor at Riley nearly 15 years ago.

The Evansville native remembers coming to the hospital as a 12-year-old to visit her older brother, Josh, throughout his treatment and during follow-up visits.

“I found out about child life through a sibling perspective,” she said, adding that her brother is doing well today – he’s married, a homeowner and a proud dog dad.

Franklin, 27, whose bachelor’s degree is in child development and family studies from Ball State University, earned her master’s in child life from Ohio University. She volunteered at Riley during her undergrad years, did a practicum at Oklahoma Children’s Hospital and completed an internship at American Family Children’s Hospital in Wisconsin.

All of that preparation led her right back to Riley 2½ years ago, which was her end goal but something she didn’t expect to happen so quickly.

“It’s a full-circle moment coming back,” she said. “I love this area because you get to do so much in such a short time. Often this is the biggest medical thing a child has gone through, whether it’s a typical procedure like tonsils or ear tubes, or something like a spinal fusion.

“We get to see different populations and different procedures. We support them in pre-op, all the way through induction until they’re asleep in the OR,” she added.

That’s right, Franklin follows patients into one of the 16 operating rooms on the second floor, staying until they are asleep.

“We’re so privileged that we are integrated so much into the ORs,” she said. “We have a great rapport with the anesthesiologists and the surgery teams.”

Franklin credits one of her child life colleagues on the unit, Lindsay Morgan, for expanding the role on the surgery unit.

“It’s not common in a lot of children’s hospitals to go into the OR," she said. "We help create a plan, whether it’s for a patient who needs lots of sensory support or our nursing staff has let us know that a patient is particularly anxious, so everyone’s safe and understands what’s helpful and what’s not helpful.”

For her part, Morgan describes Franklin as "an absolute ray of sunshine to our patients, families and staff."

"She does a wonderful job connecting with the kids to prepare them for surgery, builds them up so they're confident when walking to the OR and supports them during anesthesia induction," Morgan said.

"We see the impact she has on patients daily as she's always getting a thank you from families and a hug from patients as they walk out the door. It is an honor to work alongside her every day."

Not surprisingly, the biggest misconception about child life specialists is that they are here to just play with kids, Franklin said.

“We use a lot of play in our interventions – play is universal – but it’s never just play. We’re using it to assess, we’re using it to teach ... in a way kids can understand.”

She knows that child life looks different throughout the hospital because the patient population and medical specialty can be so different.

“Child life on the PICU is very different from child life on the second floor,” she said. “A lot of our role is to be extra support that might look like a teacher, or giving a hand to squeeze, or helping someone mark a milestone.”

The most rewarding part of job, she said, is helping kids go through hard things and giving them the tools to cope, revealing their strength, even when there might be tears.

“Crying is coping. It’s a high-stress day for kids, who are also feeling the emotions of their parents,” she said. “Being anxious for something you’ve never done before or is medically invasive is appropriate. It’s their body trying to regulate their emotions.”

So while crying is OK, she said, she tries to help them through those moments by focusing on ways to keep their body calm. That could be big breaths or a squishy stress ball or something else.

She uses those same devices in her own life.

“Many times after I finish a day on the unit and I’m working at the computer, I still have a stress ball in my hand,” she said. “Self-care is very important in this field.”

Outside the hospital, Franklin is planning her September wedding to fiancé Aaron Beck, and things are falling into place nicely, she said.

“I found my wedding dress and the venue on the same weekend. I credit a lot of it to God.”

On her days off, she likes to spend time outdoors but also indulges in what she laughingly calls “grandma hobbies” – crocheting, knitting and watching documentaries.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

What is a normal baby head shape?

When babies are born, the skull has flexible spaces between the bones, called sutures. These sutures cause the skull to resemble a “puzzle,” which is very helpful and allows the head to reshape or “mold” as the baby moves through the birth canal (this is why some babies have a “cone-head” shape when they are born that rounds-out after a few weeks). These flexible spaces also allow for enough space in the skull for brain growth. The brain grows rapidly in a child’s first two years, with the most rapid growth occurring in year one.

It is expected that any abnormal head shapes will begin to resolve on their own a few weeks after birth. If there are concerns for prolonged flat spots, soft spots or an uneven head shape, your pediatrician may refer your child to a pediatric neurosurgeon for further evaluation. The nationally ranked Neurosurgery Team at Riley Children’s is highly skilled in evaluating head shape abnormalities and will help determine if an abnormality in the shape of the skull is caused by craniosynostosis or positional plagiocephaly.

Common types of head shape abnormalities

Positional plagiocephaly

Positional plagiocephaly (commonly referred to as “flat head syndrome”) is one of the more common diagnoses seen by the Riley Neurosurgery team. Positional plagiocephaly is a cosmetic flattening (often seen on the back of the head) that occurs when the baby’s skull bones are re-arranged by an external cause, not an early fusion of the sutures. This is usually caused by how the baby is positioned, especially if they are lying in a particular position for extended periods of time, it can result in the skull flattening on one side of the head. This is a non-life threating, non-surgical finding. There is nothing wrong with the underlying brain development and the shape does not affect long-term development or cause delays in developmental milestones.

Common causes

• Infants that have a preference to turn their neck towards one side over the other or history of trauma/injury to the neck at birth.
• If they are a breastfed infant, they have a preference to feed from one breast over the other.
• Infants who do not like “tummy time” or do not spend very much time each day on their tummy.
• Young children or children with motor delays who are not yet able to roll or sit unsupported.
• Children who have head sizes on the higher end of the growth chart (it may take longer for neck-muscles to develop the strength needed to support larger-sized heads).
• Babies born early (prematurely), or who were hospitalized in the Neonatal or Pediatric ICU for a prolonged period.
• Abnormal in-utero positioning (such as breech position) or multiple-gestation pregnancy.
• The use of vacuum or forceps during delivery, or any other reported birth trauma.

How to treat plagiocephaly

Since positional plagiocephaly is caused by external forces, the best treatment is to start repositioning therapy at home as soon as possible. In general, your baby should lie on the side of the head that is not flattened. Once your baby spends more time off the flattened area and changes their head position more frequently, you will start to see improvement in the head shape as the brain and skull continue to grow.

• The American Academy of Pediatrics recommends tummy time two to three times each day.
  • Start with three to five minutes, then gradually increase the time and frequency.

• Promote range of motion of the head and neck.
  • As soon as they are able, help and encourage your baby to sit and play upright.
  • Try to keep your baby off the back of the head as much as possible.
  • Move toys and lights on the floor, play area, or car seat to their less-favored side. This encourages them to lie on the non-flat side to see those items and helps to promote neck range of motion.
  • It is not recommended to stop Back to Sleep (AAP). Continue to place infants “back-to-sleep” for SIDS prevention, but allow more belly and upright time during their awake-times while monitored by an adult.
• If your child has a preference to lay on one side of their head, it may be important for them to be evaluated by physical therapy (PT)/First Steps.
• If your baby prefers to breastfeed on one side over the other, make sure you switch sides when you hold the baby so they don’t spend more time on their preferred side.
• Cranial molding therapy
  • Cranial molding therapy (also known as helmet therapy), is a noninvasive form of management for severe plagiocephaly that can be considered after treatment failure with PT and conservative management.

Craniosynostosis

When babies born with the sutures of the skull already closed or with concerns for early closure (meaning the sutures are no longer flexible enough to allow for rapid brain growth), this is called craniosynostosis. Unlike plagiocephaly, craniosynostosis is not preventable and requires surgical intervention. If left untreated, the deformity will worsen, and can risk damage to normal brain tissue by not expanding to accommodate the growing brain. This may impact or delay normal brain growth and development.

Physical assessment is the first step your pediatrician will take to help differentiate between craniosynostosis and plagiocephaly. If a diagnosis cannot be made on physical exam alone, imaging can be used to obtain better pictures of the skull. The quickest and easiest imaging option is an X-ray which shows if the sutures have closed. At Riley Hospital for Children, a CT scan can also be utilized to provide images with a 3D reconstruction of the skull. CT scans show not only the bone and sutures, but how the brain is fitting inside the skull. These images will show the Neurosurgery team if the sutures remain open, have closed or if there are concerns for early closure of the sutures.

How to treat craniosynostosis

Children with craniosynostosis are managed by the Craniofacial Multidisciplinary Team at Riley Children’s. This team consists of Pediatric Neurosurgery and Pediatric Plastic Surgery specialists that focus on disorders of the face and skull. Many children also see Genetics to look for underlying causes of craniosynostosis, and ophthalmology to assess whether the eye socket shape and vision are developing normally.

Surgical options are dependent on the patient’s age and which suture is affected. Riley Children’s is home to the state’s largest cleft and craniofacial team and is one of the few programs approved by the American Cleft Palate-Craniofacial Association in Indiana. The Craniofacial Team will discuss the condition with you and work with you to create the best personalized plan of care for each individual child.

When to seek advice

Talk to your pediatrician if you are concerned about your child’s head development or shape. They will discuss and review your concerns and refer to Riley Children’s Neurosurgery Team if further evaluation is needed.

Two weeks ago, Duncan Diehl, 15, had what might be one of his best days ever. He rang the bell to finish rehab following a heart transplant, and he was reunited with his beloved dog, Peggy, outside Riley Hospital for Children.

It was hard to tell who was more excited. Both were grinning.

Peggy was a surprise visitor, brought by Duncan’s older brother, Dylan Collins, to celebrate Duncan’s last day of COLTT (Center of Life for Thoracic Transplant), located at IU Health Methodist Hospital.

It was a sweet reunion, as Dylan and Peggy came up behind Duncan, who was enjoying the fresh air in the green space across from Riley with his mom, Nina Collins. The family lives in Lafayette, Indiana.

There were hugs and sloppy kisses and lots of tail wags between the boy and his dog.

The two hadn’t seen each other since before Duncan’s transplant Jan. 12, exactly two months earlier. The family got Peggy as a pup last summer.

It was last Mother’s Day when Duncan first became ill, but no one knew what it was at first. He stayed home from school for nearly a week, but the following Sunday, he told his mom he was having trouble breathing.

That began a two-week back-and-forth with doctors and urgent care in Lafayette to look for answers. Finally, Collins had had enough.

“He’d try to sleep at night and wake up gasping for air,” she said. “One night he said he was hot, but his skin was clammy, and I remember seeing my dad that way before his heart condition was diagnosed. That was the moment I’m like, I’m pretty sure this is his heart. I’m not messing around anymore. Riley is the one place where I know they’re going to take my concerns seriously.”

Her older son, Dylan, now 23, had been a Riley patient as a baby when he battled liver cancer, so she knew she would get answers there.

She loaded Duncan into the car and drove him to the Emergency Department at Riley, where Duncan was almost immediately taken back for care due to his alarming symptoms.

And so began a journey that she never thought she’d be on. Duncan didn’t have any heart issues that she was aware of. Testing later revealed that the teen was suffering from dilated cardiomyopathy, a condition that makes it hard for the heart to pump blood to the rest of the body.

It can be caused by infection, diabetes, high blood pressure and other issues, and if left untreated, it can lead to heart failure.

Still, when cardiologist Dr. Sabena Hussain brought up the possibility of transplant, it was a lot for Collins to process.

“Dr. Hussain, bless her, she was really great about telling me what I needed to know when I needed to know it, and not worrying me unnecessarily before it was time,” Collins said.

There was another Riley team member who supported the family during that time, someone they knew from 20-plus years earlier.

Laura Weiger, social worker on the Heart Center, previously worked in a similar capacity on the hematology/oncology team at Riley and had met Collins and her older son during his cancer treatment in 2003.

Imagine both women’s surprise when they passed each other outside an elevator at Riley last June. At the time, Duncan was in the stepdown unit, but when his condition worsened and he was moved to the CVICU, Weiger was there to help once again.

“Because Laura and I had the best relationship from ages ago, when I found myself in this situation with Duncan and his care, there was already this ease with her,” Collins said.

“It was just this huge weight that I didn’t have to bear. Without having Laura on the team, I don’t know what kind of extra worry I would have had. I knew she was going to advocate for us.”

Watching Collins caring for her son in the hospital, Weiger knew the single mom was still the same strong, reliable parent she remembered from Dylan’s cancer journey as a baby.

“It means everything to me to support this family,” the social worker said. “It’s validating to see that a seed that was planted so long ago with this relationship was able to continue to grow and the time was right again. They are just a wonderful family. They have a special place in my heart.”

Weiger stepped up to support Duncan and his mom when it became clear that he would need an LVAD (left ventricular assist device) to help his weakened heart pump blood, providing a path to transplant.

Collins remains grateful for their honest relationship.

“I always felt part of the team and that my concerns were valid,” she said. “I felt safe to ask questions, and Laura was instrumental in that.”

Dr. Jeremy Herrmann was the Riley heart surgeon who placed both the LVAD and performed Duncan’s heart transplant. Because Duncan was so weak when the LVAD was implanted, his recovery was tough.

“Duncan showed a great deal of character after the VAD placement,” Dr. Herrmann said. “He worked hard to prepare for the ultimate transplant surgery, then basically sailed through it. He and his mother made a tremendous impression on the Heart Center, and many people celebrated his transplant.”

Today, Duncan, who towers over his mom at 6-2, is happy to be going home again, to play with his dog again, draw comic books and start planning for the next holiday. He’s a master at event planning, his mom says, most recently celebrating Mardi Gras while staying at the Ronald McDonald House during COLTT sessions.

The high school sophomore is not keen on heading back to school just yet, but he’ll be doing plenty of homework – academically to catch up on his studies and physically to take care of his body and his new heart.

And his mom said she finally feels like she can look forward again, thanks to the blessing of a donated heart and the care of the Riley team.

“Up to now, I’ve just been focused on ‘here’s what we have to do now.’ I always and forever had the roadmap in mind, like here are the steps we need to take to get us on the list.”

And now with a new heart, she said, the road is “wide open.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

The pediatric intensive care unit at Riley Hospital for Children can be a tough place to work.

A lot of critical injuries. A lot of difficult conversations. A lot of success, yes, but also a lot of sadness.

So, it’s important to have a ray of sunshine now and then. And that sunshine in human form is charge nurse Jane Watson, according to her PICU colleagues.

Watson, who has spent most of her nearly 40-year career as a nurse on the PICU, is beloved by families and fellow team members for her joyful spirit and her tender heart.

That’s why it’s hard for the PICU to see Watson leave the unit, even if she’s not leaving Riley entirely – at least not yet.

Thursday was her last day on the PICU. On Monday, she begins a new job with Riley’s infectious disease team, helping outpatient families with education on central lines for long-term IV antibiotics.

Why the move?

“I need less sad,” she said, even as she was surrounded Thursday by the laughter and good wishes of her team. “My heart is kind of mush right now. It’s been regenerating for a lot of years, but I think it’s done.”

Watson said it’s her co-workers and patients who have gotten her through the good and bad times.

“I’ve been blessed with a lot of good people. That’s really what gets you through it,” she said. “No one really knows what it’s like to work here; that’s a bond you have with each other.”

As she looks around the unit, where nurses are busy caring for the sickest patients in the hospital (think car accidents, fires, gunshot wounds, child abuse, disease and other traumas), she says it’s the kids and families who have inspired her.

“Look at these little kids, their sweet little spirits. God love ’em. They’re so amazing.”

That’s also how her co-workers feel about her. Around their wrists are bracelets with the letters WWJD. In this case, it stands for What Would Jane Do, said PICU nurse Kelsi Croy, Watson’s “work sister” for 10 years.

That’s because she has set the standard for nursing on the unit, Croy said, adding that the PICU plans to recognize nurses each year who exemplify Watson’s spirit.

“The Jane Watson Award will honor someone who embodies these core values: Always doing what’s right, making others feel valued and respected, and always delivering passionate care to patients and colleagues,” Croy said.

“You’re gonna make me cry,” Watson said. “I know I am leaving this unit in very good hands. I feel blessed that I’ve had a job I loved.”

Just for fun, the team has positioned a life-size cutout of Watson in the break room, so she won’t ever truly be gone. For her party, they sprinkled in references to her “Fryday” habit of splurging on a McDonald’s quarter pounder, fries (with salt on the side) and a Diet Coke to close out the work week, as well as her brush with fame as a contestant on “The Price Is Right” and her penchant for sending cards and notes to people.

For Valentine’s Day, she writes everyone on her team a personalized card that is “encouraging and uplifting,” Croy said.

Ruth Johnson has been a secretary on the unit for 47 years, so she has known Watson since she started as a nurse. The two are not just colleagues, but dear friends.

“Today is a very difficult day for me because I will truly miss her,” Johnson said. “She is an awesome person. She holds this place together.”

The two made a pact years ago that they would exit the unit together. Watson has a head start on her, but Johnson won’t be far behind. She plans to retire in June.

Kearstin Deno is just one of the many younger nurses who have blossomed under Watson’s encouraging leadership.

“I started here in 2016 (as a nurse in training), and Jane immediately took me under her wing. That’s literally the person she is. She will welcome anyone with open arms and a smile on her face and make you feel right at home,” Deno said.

“This unit is incredibly stressful and can be so depressing, but she is always there to give you a hug and give you positive feedback. It’s been amazing to work with her, and it’s a huge heartache to see her go. She is the light on this unit, so even in the sadness, she is our sunshine.”

In an interview a few years ago, Croy talked about that light and how it can emanate from different people at different times.

“When we can’t be that light, one of our teammates steps in and picks up our defeated souls,” she said.

“This is not an easy unit to stay on for that many years,” Croy said. “To do it for that long and to do it like Jane has – she doesn’t cut corners. In such a busy atmosphere, you can’t do everything perfectly, and Jane still does.”

“It takes me longer to get it done,” Watson said with a smile.

“It might take her longer, but I feel in this day and age we’re always looking at what we can do more quickly and efficiently, and Jane just does it better,” Croy said. “There are lots of departments that could use Jane’s spirit, her sparkle, her power.”

As she said her goodbyes throughout the day, Watson, mom to three, did her best to keep it together.

“My heart is here, and that’s the hardest part about leaving.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

What are chest wall deformities?

Dr. Makar: Chest wall deformities are conditions where the bones and muscles of the chest don't form the way they typically do. These conditions can change the shape of the chest, but they usually don’t cause problems with how the heart or lungs work. The three most common conditions we see are pectus excavatum, pectus carinatum, and Poland syndrome.

What is pectus excavatum (“Sunken Chest”)?

Dr. Makar: Pectus excavatum is when the middle of the chest, or breastbone (sternum), sinks inward. This gives the chest a caved-in appearance. It happens because the ribs and breastbone grow in an unusual way. Pectus excavatum is usually more noticeable in teenage years and can affect how the chest looks, but it rarely causes problems with breathing or the heart. If it does cause problems, like shortness of breath during sports or other activities, then you need to see a pediatric surgeon, not a plastic surgeon. If you don’t have any problems like this, and you are bothered by how it looks, our pediatric plastic surgery team can help.

Treatment: To improve the appearance, we offer custom implants designed to fill in the sunken area of the chest, making it look more even. For girls, sometimes breast implants are also used to enhance symmetry and appearance.

What is pectus carinatum (“Pigeon Chest”)?

Dr. Makar: Pectus carinatum is the opposite of pectus excavatum. In this condition, the breastbone sticks out more than usual, giving the chest a bulging appearance. This happens because of abnormal growth of the ribs and breastbone. Like pectus excavatum, pectus carinatum usually does not cause health problems but may affect confidence or self-esteem.

Treatment: For pectus carinatum, we offer procedures that help balance the chest appearance. In some cases, breast implants can be used to camouflage the more prominent chest and create a more even look.

What is Poland syndrome?

Dr. Makar: Poland syndrome is a condition where the muscles on one side of the chest don’t fully develop, making one side of the chest look smaller or flatter than the other. This condition can also affect the shoulder, arm, and hand. People with Poland syndrome may have underdeveloped or missing chest muscles, causing an uneven chest shape. Girls with Poland syndrome either don’t have a breast on the affected side, or the breast is much smaller than the normal side.

Treatment: We can use custom implants to replace the missing muscles and make the chest look more symmetrical. For females, breast implants can be used to balance the chest and create a more even appearance. Sometimes we can also use a technique called fat grafting, where we use your own fat to reconstruction your breast, but this requires more frequent trips to the operating room.

How does pediatric plastic surgery approach treatment for chest wall deformities?

Dr. Makar: Our team specializes in procedures to improve the appearance of chest wall deformities. These treatments are mainly done for cosmetic reasons, as most of these conditions don’t affect how the body functions. However, since this is something kids are born with, insurance usually covers these procedures. We’re here to help our patients feel more confident and comfortable with their appearance. If your child has pectus excavatum, pectus carinatum, or Poland syndrome, we are ready to discuss treatment options that fit your needs.

It might come as a surprise to some that Dr. Mark Turrentine is not super-human.

A superhero, yes, to many people, but even the renowned cardiac surgeon falls ill occasionally.

That was the case this week when the flu caught up with him, forcing him to take it easy for a day or two.

Just two weeks ago, “Dr. T” was celebrated on the Heart Center at Riley Hospital for Children, as his 200^th heart transplant patient, 7-month-old Emmaus Christian McCollum, was discharged.

Never one for the spotlight, the surgeon insisted that the transplant team be on hand to be recognized as well. That includes surgeons, cardiologists, nurses, transplant coordinators and more.

“If this (celebration) was going to happen, I wanted it to be about the team.”

The number of transplants attached to him is not important, he said.

“The richness of the program here is what we were celebrating, not one individual. The fact that you have one of the most highly regarded pediatric transplant programs in the country as part of the overall transplant program at IU Health, I’m not sure people understand the historical significance of this program.

“It may be 200 transplants here, but you’ve got a program here at IU Health (Methodist and Riley) that’s just north of 950 heart transplants,” he added, noting that patients have ranged in age from 4 days to just shy of 70 years old.

FIRST BERLIN HEART

The development of mechanical support devices for infants and young children as a bridge to transplant was critical to improving outcomes.

“Mark was instrumental in bringing the VAD (ventricular assist device) program to Riley,” Dr. John Brown said. “He put in the first Berlin heart. He has shepherded that program.”

Dr. Brown was among those present at the celebration earlier this month. He helped develop the heart transplant program at Riley in 1986 with cardiologist Dr. Randall Caldwell, now retired.

“Mark is an excellent cardiac surgeon,” Dr. Brown said of the man he mentored and worked side by side with for more than three decades. “He doesn’t like to talk about himself, but in the operating room, he’s very good in everything he does.”

In fact, the OR is where he feels most at home, Dr. Turrentine acknowledged during a phone conversation Wednesday.

“That’s where I am most comfortable,” he said. “John Brown and I, we’re both old farm boys.” (Dr. Brown grew up on a farm in Indiana, while the younger surgeon grew up in rural Kansas.)

“We had that farmwork ethic, and we had a lot of similarities, but we had enough differences that it made for an interesting relationship.”

Dr. Brown formally retired at the end of 2020, but he has returned to Riley on occasion to assist in the operating room.

Also on hand for the celebration was Dr. Jeremy Herrmann, who trained under both Dr. Brown and Dr. Turrentine. And while Dr. Turrentine is not one to dispense unsolicited advice, his “tremendous integrity” speaks for itself, Dr. Herrmann said.

“He is always willing to do the right thing for a patient, no matter how difficult. I’ve seen that consistently over eight years. He is widely respected for that reason.”

And contrary to what some might think, he knows how to have fun.

It’s been rumored that he has the occasional water gun fight with a patient. When asked, he replies dryly: “Very old accusations. Not documented.”

Transplant coordinator Debbie Murphy said she admires his dedication to the children that come into the program for care.

“Parents never forget that he saved their child’s life, and they love him for what he does. He takes time to know these patients and enjoys hearing about their lives many years later.”

TEXAS WAS CALLING

Dr. Turrentine, who earned his medical degree from the University of Kansas School of Medicine and completed his residency in general surgery there, thought he would end up at Texas Medical Center in Houston. But he came to Indiana to interview for a fellowship in 1988 on the advice of a colleague and decided this was the place for him. He went on to do a second residency in cardiothoracic surgery here, loved it and never left.

Lucky for Indiana, his colleagues and patients would say, but he says it was lucky for him. The opportunity to be part of a cutting-edge program surrounded by stellar people has been gratifying.

“I’ve gotten a lot more back from it than I gave to it, I think,” he said.

“This has always been a very quiet, understated program,” said the surgeon, who performed the first infant heart transplant at Riley. “People are very modest here … we became one of the top 3 pediatric heart transplant centers in the country in the early ’90s, and credit to everyone here that was forward-looking and not risk-averse but out there pushing the envelope. And that’s been the history on this campus for the last half-millennium.”

“If you go back and look at the history of cardiac surgery and in particular congenital, it’s a pretty phenomenal history and legacy for our founders,” Dr. Turrentine added, pointing to Dr. Harold King and Dr. Brown.

“The professional marriage I had with John Brown, I don’t know that it’s been matched by anybody in our specialty in the country,” he said.

BELOVED BY FAMILIES

The dynamic duo, who have performed more transplants than anyone in the program on an individual basis, are beloved by generations of Riley families, who regularly comment on any content that features one or the other on Riley’s social media pages, just as they did two weeks ago when photos of the transplant team were published.

“Amazing surgeon,” Riley echocardiogram technician Susan Gude wrote about Dr. Turrentine. “Trained under the best, Dr. Brown.”

“My family and I are on the forever grateful list,” writes Franzetta Jackson. “Dr. Turrentine performed my second open-heart surgery in 2010. I will always remember his quiet and humble spirit.”

“An amazing achievement,” said Jennifer Gray. “Fabulous surgeon and gifted man. Forever grateful my son was one of the 200 transplants he performed.”

"Dr. Turrentine and Dr. Brown performed my son’s transplant 29 years ago,” said Tonya Glaspie. “We are so blessed by them and the others on the transplant team. My son will be celebrating his 30^th birthday in May.”

“Thank you from the bottom of my heart. Our boy was one of the 200 just last year. You changed our lives, Dr. T.” – Josue Yako Hernandez

Dr. Turrentine is not one for individual accolades. He would rather celebrate the richness of the program and its people.

“There are very few places in the country that can offer what we can offer here at IU Health, not just Riley,” he said. “One thing I’m really proud of is that no one has a better outcome in single ventricle transplantation than we have here. No one has reported better outcomes. That’s pretty phenomenal, and that’s because of the quality of the people we have here.”

IN THE ZONE

His love for his work is undeniable, Dr. Brown said of his friend and longtime colleague.

“He is passionate about transplant. His technical skills are excellent. He is conscientious, and he holds everybody to high standards,” the senior surgeon said. “He and I had a great time working together. He has a dry sense of humor, and he’s actually much more animated in the operating room than he is outside of it. It’s his comfort zone.”

It’s business in the OR, of course, but Dr. Turrentine likes to keep the atmosphere light-hearted up to a point.

“Everybody knows there’s a point where you’re going to be really focused and quiet,” he said. “It’s not chaotic. Dr. Brown likes to call it a symphony, where everybody knows when to come in to play their part.”

That’s reassuring for Carley McCollum, whose son was transplanted Feb. 7 (officially No. 200). She is still amazed at the whirlwind journey she and Emmaus have been on since the little boy was rushed to Riley by LifeLine helicopter from Frankfort, Indiana last summer.

It was later determined that he was suffering from undiagnosed dilated cardiomyopathy.

Emmaus received an LVAD (left ventricular assist device) to take the stress off his heart in late September 2024, then was listed for transplant in October. He received his hero heart four months later.

“He’s such a happy, thriving baby,” McCollum said. “It feels like a dream that this happened.”

But one thing is clear, she said. The entire Riley team was amazing. She gives thanks to God for that.

“I want people to know that only by the grace of God have we gotten through this. He is taking care of us.”

201 TRANSPLANTS

Since Emmaus’ transplant, Dr. Turrentine has assisted Dr. Jeremy Herrmann on one more transplant – 12-year-old Ja’Karr Ashley, who has been inpatient since November.

That brings the transplant total to 201, not that Dr. Turrentine is counting.

He’s actually hoping to wind down a bit, letting younger surgeons pick up the mantle. That would give him more time for the medical mission trips that he takes several times a year to operate on sick children in the Middle East who have little access to medical care. It’s the closest thing to the pure practice of medicine, he said.

Having completed 40 trips (he has another trip to Jordan planned in April), he and the Heart Center team who accompany him have operated on about 600 children, he said, most who would otherwise not have received lifesaving care. That’s what keeps him going back.

“The people there honestly become like family. It’s always good to see them. Some of them have really had it rough, and it’s nice to be a part of something good in somebody’s life.”

It’s also eye-opening for medical residents and others who travel with him. They come back with a better understanding of the privilege they enjoy in the U.S., he said.

“It’s a nice extension of Riley and IU Health, giving something back to those less fortunate in other parts of the world,” Dr. Turrentine said. “You learn a lot from that.”

He’s not ready to retire yet, but he is reflective as he considers his career. And he is grateful.

“I can’t imagine having had a more rewarding professional life than what I’ve had here,” he said, taking into account the inevitable highs and lows. “Fortunately, there are more highs, but the lows are tough.”

Still, he said, “There’s nothing else I can imagine ever having wanted to do more than this and feel like maybe I did something to impact somebody’s life for the better. I think when you have that opportunity, you can’t help but feel blessed.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

For Matthew Mast and Brandon Hawk, nursing and teaching go hand in hand.

Mast, a nurse in the Emergency Department at Riley Hospital for Children since 2019, and Hawk, a nurse on the inpatient rehab unit at Riley since 2019, believe that sharing their knowledge with the next generation of nurses helps encourage students and new nurses.

The two are among Riley Hospital for Children’s newest class of certified nurses, a distinction celebrated each year on March 19 – Certified Nurses Day.

Both earned their certifications last year (Mast in pediatric emergency nursing and Hawk in nursing education and rehabilitation nursing), joining more than 200 Riley nurses who have earned and maintained the highest credentials in their specialty, according to Kristin Miller, a certified pediatric nurse herself and senior project manager for Riley.

“Professional certification is a voluntary designation earned by individuals who demonstrate a high level of competency, skill and knowledge in their field,” Miller said. “Certification affirms advanced knowledge, skill and practice to meet the challenges of modern nursing.”

Mast has served as charge nurse and shift coordinator in the ED and more recently transitioned to a clinical advisor role, which allows him to coach new nurses, especially those right off orientation, and teach classes in the ED.

“I love learning, so I saw getting my certification as another way to gain knowledge,” said Mast, who studied for the certification exam last fall before taking and passing the test in December.

“When I started as a new grad, I would see the certification badges, and I looked up to those nurses and wanted to make that a priority in my nursing career.”

Hawk, who began with IU Health as a nurse on the adult cardiac medical-surgical unit at IU Health Methodist Hospital in 2018, made the move to Riley the following year and loved it.

“I love working with kids and being part of their journey on inpatient rehab,” he said.

He advanced to shift coordinator, then became part of the nursing professional development team, working as an educator on the unit. He moved into travel nursing for a year before rejoining the rehab unit, where he currently works part-time. The rest of his time is spent teaching the newest crop of nurses at Indiana University Indianapolis School of Nursing.

“I just fell in love with teaching,” Hawk said. “I started precepting nurses on the rehab unit, and as dayshift coordinator I helped new nurses get oriented to the unit. Now, I’m doing what I love – teaching and working as a nurse. It’s the best of both worlds.”

He sees plenty of promise in the newest class of nurses and hopes they will receive the support they need when they enter the field.

“I see a lot of upcoming nurses who are very passionate about wanting to give their future patients the best care possible and who are working very hard in school,” he said. “The environment in nursing is getting better, but we’re still recovering from the pandemic when a lot of nurses got burned out.”

Mast, who initially considered a career in physical therapy, said working in the ED is a challenge every day, but one he relishes.

“One thing that keeps me going is there is always something new, so you never know what you’re walking into,” he said. “I also appreciate the teamwork in the ED, even on our worst days. We recognize we all went through the same thing and we’re there for each other, ready to help, no matter what.”

Speaking of something new, Mast and his wife, Haley, will join the ranks of new parents this spring. They are expecting a little girl.

“I’m excited for this next step,” he said. “I feel like it will be different working in peds now because I’ll have a kid of my own.”

For Hawk, earning first his master’s degree in nursing education, then his certification last year helped improve his skills and will improve patient care as a whole as he shares his experience with newer nurses.

“Certification obviously validates your nursing expertise, but it also deepens your knowledge,” he said. “And it’s never too late to get certified. There is always room for growth.”

Hawk and his wife, Lauren, love to travel and hike, most recently visiting Acadia National Park in Maine.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Maureen Gilmer

As he looks over at his son, tucked in close to him on a couch at the Riley Outpatient Center, John Charters shares a bit of advice.

“Make everything count. You’re not promised tomorrow.”

The father of two speaks from painful experience, even as 10-year-old Chance Charters gives him the side eye frequently as father and son talk following a Riley appointment.

Charters and his kids have made the most of all the tomorrows they’ve been given since an auto accident one year ago last month critically injured Chance and took the life of his mom, Amanda Charters, near the family’s home in Roachdale, Indiana.

Chance, who suffered a traumatic brain injury, was LifeLined to Riley Hospital for Children, where he would go on to endure multiple surgeries and extensive rehab.

It took a team of doctors, surgeons, advanced-practice providers, nurses and therapists to put Chance back together again last year, starting with an 11-hour surgery that first day at Riley.

As the general surgeon, Dr. Robert Burns was the captain in the operating room that February day, which stretched into night. He opened Chance’s abdomen to check for internal organ damage. That’s when he found the boy’s bladder was ruptured, so urology surgeon Dr. Benjamin Whittam was called in to repair that damage.

Meanwhile, vascular surgeon Dr. Ashley Gutwein focused on an artery in Chance’s left thigh, where blood flow was compromised. In addition, orthopedic surgeon Dr. Aki Puryear joined the effort to stabilize the boy’s broken pelvis with an external fixator and stabilized the bones in his extremities.

Later, Dr. Luke Lopas from IU Health Methodist Hospital’s orthopedic trauma service came to Riley to repair Chance’s pelvis.

By April of last year, Chance was learning to walk again, feed himself again and become semi-independent again during a lengthy stay in Riley’s inpatient rehab unit.

In the past year, the boy and his dad have made many, many trips to Riley for follow-up visits.

“I’ve been around this building a time or two,” John Charters said. “I know my way around.”

That includes an inpatient stay over Thanksgiving week last year after Chance developed an infection that required another surgery.

“At least we got some pumpkin pie and ice cream,” Chance said about that unexpected stay in the hospital. But he took advantage of those days to flirt with the nurses and find out where all the toys are kept.

“He owned that hall up there on the eighth floor,” his dad said. “He had those nurses wrapped around his finger.”

Most recently, the pair saw Dr. Whittam in the urology clinic to see how Chance’s bladder was healing.

“He put it all back together,” John Charters said of the surgeon. “We’re all good now. There are a few things they’ll keep watching, but he thinks we’re out of the woods.”

At that last comment, Chance nods his head, even as he concentrates intently on his Switch, breaking into little upper-body dance moves as he plays a game.

“A dancing fool,” his dad says, laughing as Chance glares at him. “He’ll come through the living room sometimes doing the ‘griddy.’”

Charters treasures those glimpses of Chance’s personality – his humor, his sarcasm, as it gives him hope that his son is on his way to becoming whole again, even as he and his sisters miss their mom desperately.

“It’s been rough, different, weird. I still can’t believe it. You expect to come home and be able to talk and there’s nobody there to talk to.”

He and his kids are “pretty tight,” he said, and they visit the kids’ grandparents in Illinois frequently, which helps.

Chance loves baseball and basketball, but this spring seemed too early to put him back into baseball, his dad said. Basketball is still on the table for the fall, depending on what orthopedics physician assistant Todd Osterbur says after their April appointment at IU Health West Hospital.

Chance’s right ankle is still not quite healed, but he doesn’t have a noticeable limp, his dad says.

For now, he enjoys fishing and playing catch, in addition to video games. The family goes camping whenever they can, and this year they are headed to Florida for spring break.

A fifth-grader, Chance says he doesn’t care much for school, with the exception of lunch, recess and science.

Homework is a challenge for father and son.

“It’s a learning curve for all of us without Mandy,” Charters said.

But they are making their way, day by day.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Six-month-old Piper Norris doesn’t yet know how special she is.

The second child of Matt and Shelby Norris of Plainfield was born with cystic fibrosis (CF), but her story starts well before birth.

Piper was the first child at Riley Children’s Health to be treated in utero with a drug (Trikafta) that Shelby Norris took to reduce CF complications for her baby at birth.

CF is a genetic disorder that causes thick, sticky mucus to build up in the lungs, pancreas and other organs, leading to breathing and digestive problems. It's inherited through a mutated gene, and while there's no cure, treatments can help manage symptoms and improve quality of life.

Trikafta, approved by the FDA in 2019, treats the genetic mutation causing CF, not only improving symptoms but slowing the progression of the disease.

Though officially approved for ages 2 and older, a Riley Fetal Center multidisciplinary team was able to advocate for the Norris family to receive in-utero therapy for CF, allowing Shelby, who does not have CF, to begin taking the drug while pregnant. Piper was then approved for her own prescription as the team guided them through the insurance authorization process.

It wasn’t easy by any means. But Shelby, a veterinarian, was relentless in her pursuit of information regarding Trikafta in pregnancy and found partners at Riley who were willing to listen.

Dr. Hiba Mustafa, director of fetal surgery, coordinated the team meeting to discuss offering this innovative fetal therapy. The team also included Dr. Don Sanders, a pulmonologist and director of Riley’s CF Center; Dr. Cynthia Brown, director of the adult cystic fibrosis program at IU Health; Dr. Mindy Markham, neonatology; Karrie Theoharis, genetic counselor; the pharmacy team and a host of others.

The team meeting included a thorough review of the available literature and other centers’ experiences, and a decision was made to start offering this therapy in the hope of reducing CF-related bowel complications in infants.

“I would be the first patient at Riley (that did not have CF themselves) to take Trikafta for their unborn baby with CF,” Shelby said, recalling her journey last year.

“There were many unknowns since this is still a very new protocol … however there was never any hesitation in my mind because I wanted to do anything I could to help my daughter as well as any other families that find themselves in this situation. We all can never grow and learn if we aren’t willing to take risks for those we love and beyond.”

Dr. Mustafa said the Norris family’s story “highlights the profound impact of genetic screening during pregnancy, allowing early detection of conditions like cystic fibrosis.”

“With groundbreaking in-utero therapies like Trikafta, we now have a window of hope — offering treatment even before birth,” she added. “While data on these interventions is still emerging, every case contributes to building the evidence we need. The more data we gather, the stronger our case for making these life-changing therapies accessible, cost-effective, and covered by insurance as a standard of care."

For Shelby and her husband, taking Trikafta was a low-risk, high-reward option.

“After starting Trikafta, I was seen by Dr. Mustafa and her colleagues at the Riley Fetal Center to continue monitoring our girl in utero for any complications,” said Shelby, who was also seen by Dr. Brown in the adult CF clinic to ensure she wasn’t suffering any adverse reactions from the drug.

Multiple ultrasounds of baby Piper over several weeks revealed that her bowel issues (common in CF babies) had resolved.

“Our perfect Piper (6 pounds, 18½ inches) was born with no signs of meconium ileus (bowel obstruction), no need for bowel surgery, no NICU stay and no side effects from the Trikafta,” Shelby said.

“She was unfortunately found to be pancreatic-insufficient, but this is something that is manageable and may change in the future.”

Dr. Sanders continues to monitor Piper’s health as she takes the drug.

He and his team worked with the Riley Fetal Center and all the other teams mentioned above to determine the best options for Shelby and Piper after consulting with CF teams across the nation.

“We want to be there to support them,” Dr. Sanders said, adding, “This is a new opportunity for us. We only have case reports, so we’re not sure how much benefit there will be … but most parents in this situation want to do something if they can, and part of my job is to work through that decision-making process with them.”

Life expectancy for a baby born today with CF is about 60 years, which is much improved from previous decades, but there is still a high risk for hospitalizations due to respiratory issues, Dr. Sanders said.

“About 20 percent of people with CF can suffer bowel obstructions, which can lead to further complications and surgery. With newborn screening now (and prenatal testing when requested), we have early diagnosis and can avoid some complications that can lead to worse outcomes.”

While Piper is not cured, the hope is that the medication she is taking will improve her overall health until even better treatments or a cure are found.

“Trikafta has been a fantastic medication for (CF patients),” Dr. Sanders said, pointing to improvements in lung function, reduced hospitalizations and better growth and nutrition.

As director of fetal surgery, Dr. Mustafa said her job is to think outside the box when it comes to caring for unborn babies and their moms, rather than waiting until a baby is born to address a health issue.

“That kind of thinking was important for this family. We started with a multidisciplinary meeting with the CF clinic, maternal-fetal medicine, neonatology, critical care, nursing, pediatrics, pharmacy ... We reviewed the literature and case reports from around the country, we talked with our colleagues elsewhere, and we thought this approach has enough promise that we can start it for select candidates,” she said.

Still, it’s hard to say how much this innovative therapy will change Piper’s life, Dr. Mustafa cautioned.

“We know it improves bowel function for these babies, but for long-term outcomes we need more babies to look at and decide if this is truly helpful. That’s why there is a registry being built … to look at imaging, outcomes and findings to see if this is truly as promising as we hope it is.”

Shelby is just grateful to the Riley team for listening to her and advocating for her family every step of the process.

During a recent visit to Riley, she and her husband, along with Piper and Piper’s big brother, Elliott, reunited with both Dr. Sanders and Dr. Mustafa.

“She’s so cute,” Dr. Mustafa said, as she cuddled Piper. “Her eyes are so beautiful.”

This journey has been stressful, Shelby acknowledged, with a lot of appointments and a lot of unknowns. But their goal in sharing their story is to help other families dealing with a CF diagnosis.

“If you dig, the information is there, but we want to make it more accessible so others can be helped by it,” she said.

“We are so incredibly thankful to our team at Riley for the safe and healthy arrival of our Piper Laine. We advocated for her fiercely, and all of the teams were and continue to be right there every step of the way with unwavering support.

“It’s easy to get down and lose faith, but things are changing,” Shelby added. “Our daughter is going to know a very different CF than those before her, and that’s so encouraging.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Safety is always top-of-mind at Riley Children’s Health, but Monday morning was an opportunity to spotlight several team members who have walked the walk in the past year.

To kick off Safety Week at Riley, members of the Safety Advocate Council gathered to recognize individuals in different departments for their leadership in the safety space.

Dr. Mara Nitu, chief medical officer, thanked the group for its work, noting that interdisciplinary cooperation and passion for taking care of kids make Riley stand apart.

“You make a huge impact, not simply by preventing harm and designing all the structures that help us keep our patients safe, but most importantly through the influence you all have on the culture of safety,” she said. “I’m so proud and so thankful for all your work.”

Monday’s award winners included: Ronin St James, a nurse in the PICU, for error prevention; Michelle Kussin, pharmacist on the infectious disease team, medication safety; Vannessa Taylor, labor and delivery nurse, team member safety; and Lindsey Biggs, project manager-education, safety leader award.

Taylor, who said she was completely caught off-guard by the award, was nonetheless grateful.

"It felt good to be recognized and honored for orchestrating the psychological debriefing platform," she said. "I spent hours researching different patient cases and providing my team a safe space to debrief traumatic cases. I am very thankful for being nominated and awarded the Team Member Safety Award."

The Safety HeRO Award, presented by the High Reliability Organization Workgroup, recognizes teams and individuals who promote a culture where it is easy to do the right thing and impossible to do the wrong thing. This year’s award went to the 5W and 5EA virtual mentors assigned to support new nurses on the hematology-oncology and stem cell units. Mentors recognized were Erika Pierce, Allison Scott, Carol Hayden, Carly Cason, Nicole Wilson, Megan Thompson, Melanie Toledo and Jake Harmon.

All nominees also were honored at the event.

David Biggerstaff, Riley’s new president, dropped in to congratulate the nominees and winners and encourage them to keep moving forward.

“Hearing about the work that happens in this organization every day is just exceptional,” he said.

“I want to thank all of you for that commitment. I want to thank you for your commitment to our kids. I just could not be more impressed with the work of this organization, and I look forward to continuing to work with you as we build on that foundation.”

The Riley Safety Fair will be held from noon to 2 p.m. Wednesday in the Maternity Tower atrium.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Shakiyla Rogers couldn’t believe her ears. She was in a conference room surrounded by co-workers when her name was announced as the winner of the DAISY award for the month of December.

“I saw all of them come in to present the award, and it wasn’t even a thought that it was for me,” the PICU nurse said. “I’m like, ‘hush, are you serious?’”

They were serious alright.

And the nominator, a young mom whose baby was in Rogers’ care, was very serious.

“I cannot imagine the strength it takes to come to work each day and experience the life of a PICU nurse,” said Kayla Lillo, whose daughter, Leda, spent several months in the NICU and PICU at Riley Hospital for Children.

Leda, who was born at IU Health Bloomington Hospital in November 2023, was diagnosed with tetralogy of Fallot (a heart defect), bronchopulmonary disease and a host of other illnesses. She was transferred to Riley four days after she was born. She had her heart repaired last September and was able to go home with her parents for a short time.

“That was the best three weeks I’ve ever experienced,” Lillo said.

More complications, including a rare liver cancer diagnosis, followed, leaving Lillo and her husband, Derek, distraught.

That’s why Rogers’ care as a nurse and a former NICU/PICU mom herself was so important.

Rogers became a nurse at Riley after spending months at the hospital with her own son in the first year of his life. Caiden was born prematurely, weighing 1 pound, 15 ounces.

Now 8, he is “a ball of life,” Rogers said.

But when he was discharged from Riley as an infant, he went home with a feeding tube, as well as a trach tube and ventilator to help him breathe.

During that time, Rogers found strength in the care that surrounded her, and it inspired her to resurrect her dream of going to nursing school.

Now, she can be that strength for others when they need it.

“I think I was able to connect with Leda on a deeper level because of my experience with Caiden,” Rogers said, “so I tried my best to talk to her as a parent, which I think she appreciated.”

One of the best pieces of advice Rogers gave Lillo was to get out of the hospital, if only for a walk outside.

“She noticed that I was crying and told me that her son had spent multiple months here in the NICU when he was born as well,” Lillo said.

“She explained to me that these walls can be so depressing, especially being in a place where you experience and hear the trauma of other children daily. She was the first nurse who truly understood the pain I felt. She was like an angel I didn’t know I needed.”

Lillo, whose daughter passed away in January, remains grateful that she had Rogers to lean on during a dark time.

“She is truly our rainbow on a cloudy day. She deserves all the flowers.”

Rogers is touched by Lillo’s comments and the recognition she has received.

“I was very grateful for it because sometimes you can wonder if your hard work is noticed,” Rogers said. “I’m glad that I was able to help her during a hard time. That was my goal in becoming a nurse – to help those families because I was one of them.”

Nominate a nurse who exemplifies excellent clinical skills and compassionate care here.

Best possible outcomes for cystic fibrosis

Home to one of the largest cystic fibrosis programs in the nation, the pediatric pulmonology program at Riley Children’s is a leader in providing the best possible outcomes for children and young adults with cystic fibrosis (CF). As one of the few pediatric centers in the U.S. to offer theratyping, Riley Children’s has been integral in providing CF transmembrane conductance regulator (CFTR) modulators that will greatly benefit the CF population.

"CFTR modulators are transformative for patients and have made a huge difference in quality of life and outcomes,” Don. B. Sanders, MD, MS said, pediatric pulmonologist and director of the Cystic Fibrosis Care Center at Riley Children’s. “These medications are only approved for certain CFTR mutations. However, we have used theratyping to demonstrate that patients with rare CFTR mutations respond to these medications, which has allowed more patients to gain access to these highly effective medications.”

Additionally, under the leadership of Dr. Sanders, the Cystic Fibrosis Care Center is anchored by a leading pulmonary function laboratory. Directly impacting patient care, this specialized lab has helped train other labs across the nation to perform multiple breath washout (MBW) and ensure MBW data is acceptable for research.

Learn more about CF care at Riley Children's.

One of the nation’s best for heart transplant survival

With one of the few Pediatric Heart Failure/Transplant Programs in the Midwest–and the only program in Indiana–Riley Children’s is among the nation’s leaders in pediatric heart transplant outcomes. Consistently surpassing survival benchmarks, the Scientific Registry of Transplant Recipients (SRTR) proves we’ve achieved notable success rates:

• 100% 90-day pediatric patient survival (benchmark: 96.1%)

• 100% one-year pediatric patient survival (benchmark: 93.1%)

• 100% three-year pediatric patient survival (benchmark: 85.1%)

Additionally, the pediatric heart surgery program has the eighth-lowest hazard ratio for pediatric heart transplant (0.68) in the country, a key indicator of the heart center’s exceptional performance. These stellar outcomes are attributed to a variety of distinguishing factors, according to pediatric cardiologist John J. Parent, MD, MSCR, medical director of pediatric heart transplant at Riley Children’s.

“Our experienced cardiothoracic surgeons are highly skilled technically, particularly when transplanting to patients with congenital heart disease,” Dr. Parent said. “This is especially true for patients with Fontan completions. In effectively managing bleeding, our surgeons are able to reduce ischemic time—a factor that’s critical to success.”

Learn more about our heart transplant outcomes.

More about our outcomes

Year over year, Riley Children’s paves the way in better patient outcomes across many other pediatric specialties, including:

• Our hematology and oncology program provides the best possible outcome ratings for five-year cancer survival. As leaders in stem cell transplant, our expert care team has achieved a 100%, 100-day survival rate for allogeneic transplants.
• As the 12^th pediatric center in the nation to launch aquapheresis, our nephrology team uses continuous renal replacement therapy to treat small patients, including neonates. Also, in the field of neonatal acute kidney injury (AKI), pediatric nephrologists drive novel research to explore a high-functioning dialysis catheter that works to support critically ill infants with AKI in low- and middle-income countries.
• Through the gastroenterology, hepatology, and nutrition program, our specialists are involved in robust research to improve outcomes, including a groundbreaking study led by pediatric gastroenterologist, Jean Molleston, MD. Her work focuses on a new non-invasive test that can be used to predict better outcomes for children with biliary atresia.

Causes of constipation

Constipation means hard poop that may happen a few times a week or less. When constipated for a long time, it can lead to encopresis, a condition where stool builds up in the colon and rectum, causing it to stretch and lose control of bowel movements. Pooping may also be painful or straining.

“In kids, constipation may also be from holding their stools in due to prior experiences of fear or pain and is especially common during potty training or when just starting school,” Dr. Andrewski said.

What to expect at a pediatric visit

When you notice constipation in your child, consult your primary care provider, where they will ask you questions about your child’s poop, such as:

• How often they go?
• What does it look like?
• Is it painful?
• Is there blood?
• Do they have poop accidents?
• Are they unable to control when they poop?

Your doctor will also evaluate symptoms like belly pain, vomiting, weight loss and diet, and they will want to know when the difficulty of popping started and if it is getting worse or staying the same. This assessment will help determine the severity of the condition.

Symptoms of constipation

During your pediatric visit, your doctor will check for “red flag” symptoms, which may include:

• Significant weight loss
• Not pooping within the first 24-48 hours after birth
• Muscle weakness
• A change in the way your child walks
• Lead exposure

Your provider may also examine your child’s reflexes and skin changes on the lower back. If they notice anything abnormal, a treatment plan may be recommended.

Treatment options

Depending on the severity of your child’s constipation, your provider might recommend:

• Blood or imaging tests
• Medicine to help the colon contract or keep the stool soft

Additionally, the following are easy at-home treatment options to help with constipation:

• Establish a toilet routine–have your child sit on the toilet for 5-10 minutes after a meal twice a day
• Use a foot stool when pooping
• Minimize distractions like phone or tablet time when pooping
• Blowing bubbles into a pinwheel to help the bottom relax

When to seek emergency care

In some cases, constipation may require emergency treatment, such as when your child develops anal fissure, or a crock or split in the tissues that line your anal canal, causing acute pain and bleeding. Other emergency cases might be required when your child experiences severe abdominal pain or inability to drink enough fluids to stay hydrated.

When to see a specialist

If larger concerns arise, your pediatrician may refer your child to a pediatric gastroenterologist. Referrals are typically made when:

• Constipation is linked to weight loss
• There is concern about an anatomic or structural cause of constipation
• Constipation is so severe it requires admission to the hospital

Expert care at Riley Children’s

Remember, when your child is constipated, your pediatrician can help guide you in the right direction. And as more support is needed, the expert gastroenterology team at Riley Children’s is always here to provide the specialized care and attention your child needs.

Learn more about pediatric gastroenterology at Riley Children’s.

When Derrick Keener looks at his newborn son, Brooks, he can’t help but think back to his own childhood, or at least the stories his parents have told him about the time he was a Riley kid.

As baby Brooks lay in a NICU bed at Riley Hospital for Children recently, Keener shared how his son’s journey was a bit like his own start in life.

Thirty years ago, at just 5 days old, Derrick Keener was rushed to a Lafayette, Indiana, hospital when his big sister noticed he was having trouble breathing.

He was air-lifted to Riley, where he was diagnosed with chylothorax, a type of pleural effusion, a rare but serious condition in which fluid builds up between the layers of tissue that line the lungs and chest cavity. It could have been fatal, but the Riley team used a procedure called thoracentesis over several months to drain the fluid and give his lungs and heart time to heal.

Three decades later, Keener and his wife, Allison, of Lafayette were stunned to hear that the baby Allison was carrying was suffering from pleural effusion that resulted in hydrops, a serious condition where fluid builds up in many areas of the unborn child’s body.

Allison, a nurse at IU Health Arnett Hospital in Lafayette, knew something wasn’t right about this pregnancy. Already the mother of a 2-year-old, she had some basis for comparison.

But even she was surprised when at a 30-week appointment, she was measuring as if she were 35 weeks’ pregnant. An ultrasound revealed excessive fluid not just in the baby’s chest cavity around his lungs (pleural effusion), but also in his abdomen and skin tissue (hydrops).

That’s when the Keeners were sent down to Riley and connected with the maternal-fetal medicine team, including Dr. Erin Cleary, MFM specialist.

“Dr. Cleary was amazing,” Allison said. “They did an echocardiogram on him (the baby), and his heart was perfect.”

That was good news, but it was in conversations with Derrick that doctors began to see a possible connection between what dad suffered as an infant and what was happening with baby Brooks in the womb.

The MFM team immediately consulted Dr. Hiba Mustafa, director of fetal surgery for Riley. A thorough assessment was done, including ultrasound, echocardiogram and temporary drainage of fluid in the chest to determine the most likely reason for hydrops.

The team determined based on imaging and testing results that hydrops mostly resulted from primary pleural effusion. They decided to proceed with the placement of chest shunts (tiny flexible tubes) in the baby’s chest to drain the fluid out of the chest cavity and into the surrounding amniotic fluid while the baby was still in utero.

While the procedure has risks, including pre-term labor, not doing it was riskier and potentially fatal for the baby.

All of this happened so quickly that the Keeners were equal parts overwhelmed and impressed.

“When we got here, they were working so fast,” Derrick said, recalling how he was talking by phone with his mom about his own experience as an infant and sharing that information with the medical team.

“They were putting all those pieces together in real time,” Allison agreed. “We kept telling ourselves we’ve never seen a hospital move so quickly.”

The fetal surgery team drained an astounding 3 liters of excess amniotic fluid off of Allison before placing the chest shunts.

“She was a champ,” Dr. Mustafa said of Allison during the shunt surgery. “She watched the entire procedure. Not many people can do that.”

“For my nurse brain, it helped my anxiety,” Allison said. “I had an epidural, they set a screen up, and I’m watching, like, what are we doing now? For my mom brain, it was kind of hard, but it still helped me.”

The weekly follow-up ultrasounds showed resolution of both the pleural effusion and the hydrops, and a plan was made for Allison to deliver vaginally near term.

At the end of January, she delivered 8-pound, 3-ounce Brooks at Riley at just under 37 weeks. Both shunts were still intact after delivery. They were removed, and baby Brooks was taken to the NICU.

After a 17-day stay, Brooks is now home in Lafayette with his family, free of any respiratory support, and he only requires a low-fat, low-lipid, high-calorie formula to help his digestion.

“He is so content,” Allison said. “He doesn’t really let all of this bother him.”

The family underwent genetic testing to get answers, and a gene passed from father to son was discovered – the results coming three days before Brooks was born.

The genetic condition that affects Brooks, Milroy disease caused by a genetic mutation in the FLT4 gene, is so rare that there are only a handful of cases reported in medical literature worldwide, according to Dr. Kristen Suhrie, director of perinatal genetics at Riley.

"The Riley NICU cares for many newborns with rare genetic diseases, so while any one genetic disorder that affects patients is rare, we see many different rare diseases that affect many different patients," she said. "So much so, that we say rare genetic disease is common in the NICU."

“The genetics counselor said they’d never seen this passed from parent to child,” Derrick said, adding that the couple’s daughter did not suffer the same condition. “Apparently, it’s a 50-50 chance that we would pass it on.”

Victoria J. Thomas is an advanced practice provider with Riley’s Perinatal Genetics team. Before genomic testing, she said, infants with a buildup of lymph fluids in the body and similar disorders had prolonged hospitalizations due to delayed diagnosis.

In Brooks’ case, she said, prenatal testing and early identification of Brooks' gene mutation allowed the NICU team to “provide timely, individualized management and specialized care.”

“We are pleased that Brooks and his family received answers and were able to discharge home safely and timely,” she said.

While the shared condition between father and son is rare, Dr. Mustafa said, early identification and treatment made a big difference, and she credits Dr. Cleary and the MFM team for looping in the fetal surgery team from the beginning.

“She got the ball rolling. She had good knowledge that we could do something. Not every case of hydrops is hopeless. That’s how many people perceive it, but we try to educate that there are types of hydrops, particularly with pleural effusion, that can be helped by placing shunts, and that’s the case here. We expect Brooks to continue to do well,” the surgeon said.

"Brooks was able to undergo prenatal treatments for his disorder by our maternal fetal medicine doctors that were lifesaving," Dr. Suhrie added. "He was then able to be born right here at Riley so our neonatology team could continue targeted treatments for his disorder because we knew the exact genetic cause for his symptoms."

While many patients with symptoms of genetic disease may never receive a genetic answer or may undergo a “diagnostic odyssey” of years before the genetic cause is discovered, genomic testing, prenatally or shortly after birth, is allowing doctors to make a diagnosis early, Dr. Suhrie said.

"Here at Riley, we are grateful to have the opportunity to care for patients like Brooks that are affected by genetic disease," she said. "We can’t thank his parents enough for trusting us with his care."

As the Keeners settle in at home, they are grateful for their family of four and glad to have the flurry of activity surrounding Brooks’ diagnosis and treatment mostly behind them.

“We feel amazing about the care at Riley,” Allison said. “I think that if he wouldn’t have had the shunts, he wouldn’t be here, or he would have had a much longer NICU stay.”

Photos by Mike Dickbernd, mdickbernd@iuhealth.org, and Maureen Gilmer, mgilmer1@iuhealth.org

Lisa Bemis was barely 15 years old when she decided she was going to become a nurse on the cardiovascular critical care unit at Riley Hospital for Children.

As a teen, she underwent open-heart surgery by Dr. Mark Turrentine to repair an atrial septal defect (ASD), a congenital heart defect.

Doctors had told her parents that the hole in the wall separating the two upper chambers of her heart might close on its own, negating the need for surgery, so they chose to wait. But the hole did not close, and eventually the swimmer and softball player’s endurance began to falter.

“I started having symptoms at around 13, and it just got worse,” she said. “They did more echos and heart caths and decided it needed to be closed.”

Today, Bemis, a mother of two, has found her home at Riley, working with patients diagnosed with various heart conditions.

“You get all ages and all stages on the Heart Center and a wide variety of defects,” she said. “It’s amazing what we get to do here.”

On Friday, she was caring for newborn Wren Souders, born just six hours earlier. Wren, daughter of Dylan Souders and Rachel Sigmund, is in the CVICU for treatment of tetralogy of Fallot, a four-pronged heart defect that was diagnosed when Sigmund was 32 weeks’ pregnant.

As Bemis tended to her tiny patient, she said, “I’m the luckiest person in the world to get to work with these little ones, and the older ones, too.”

She also gets to work with the surgeon who saved her life, Dr. Turrentine, a legend at Riley.

“If one of my kids ever needed surgery, he would be the one to do it,” she said.

She is humble about her own past, explaining that her heart defect was nothing compared to what the patients go through in the CVICU.

It did, however, point her in the direction of a career she loves and one where she hopes she makes a difference with the kids – and adults – in her care.

“I remember there was a young girl who was worried about her scar from surgery, and I told her about my experience and showed her the tip of my scar. It’s something to be proud of,” she shared. “It shows an important time in your life when you had to be a fighter.”

Returning to Riley as a CVICU nurse is a full-circle moment for Bemis, who graduated from Indiana University.

“It feels surreal, 100 percent,” she said. “Everybody has hopes and dreams at that age, and things can change. But when people say they’re living the dream, I absolutely am living my dream.”

She’s a dream co-worker as well.

“Lisa is an absolutely amazing nurse and person,” said Melissa Keesling, manager of clinical operations for the CVICU. “She is a very hard worker, and she takes amazing care of our heart kids.”

Photos by Maureen Gilmer, mgilmer1@iuhealth.org

Bella Sutton has been waiting for a donor heart at Riley Hospital for Children for just shy of 11 months now, but in that time, she has stolen the hearts of many a nurse and caregiver on the Heart Center.

Bella, 7, is a cheerful, precocious first-grader who has made herself quite at home in her hospital room across from the Heart Center playroom.

In fact, her room is so full of toys it looks like a playroom itself.

The biggest toy is a shiny new bike – a Christmas gift – that she is not big enough to ride yet, but she loves just looking at it, she said.

As she gives a mini tour of her room on a recent Saturday, she points out her snack cabinet, her Barbie area, her tiaras, her little library in the window, a wild assortment of stuffed animals, and stacks of games and puzzles.

It’s not all fun and games for this little diva dressed in unicorn PJs with pigtails springing out of her head. She spends some of her time in between hospital procedures and tests “working” as a junior charge nurse with some of her favorite nurses.

The list of her top nurses changes by the day, but on this day, she is surrounded by the actual charge nurse, Gretchen Bracey, as well as nurses Lacey Cooksey and Olivia VanGordon.

The “OGs,” they call themselves, reminding Bella how they were with her in her first days on the unit when she was adjusting to living in the hospital, away from her mom, Amy Sutton, and her two younger siblings.

Sutton comes down to Riley on the weekends from the family’s home in Dunkirk, Indiana, for a slumber party of sorts with her daughter. The two order Bella’s favorite foods, watch movies, play games and do puzzles. Bella clears all the stuffed animals off the pullout sofa in the room so her mom has a comfy place to sleep at night.

Bella has her own badge for her “chargette” duties on the unit, but it’s lost amid the clutter of her room, so the nurses make a temporary sign for her before she “goes on duty.”

She is definitely Bella in charge. And she’s in training for the day she becomes a nurse or maybe a doctor, she said.

“I want to work here. I don’t know if I want to be on nights or days,” she pondered, before deciding that days would be best.

“You have a little time to think about it,” Bracey laughed. “We’ll be checking up on you when you’re 18 to see if you’re in nursing school.”

Bracey and the other nurses adore Bella, who doesn’t know a stranger. In fact, visitors to her room over the weekend found her holding court at a little table just outside her room where she was offering tattoos and collecting candy the day after Valentine’s Day.

“She’s very social. I can’t keep her in her room,” Sutton said, as she followed her daughter around, clearing the way for Bella and her constant companion, the Berlin Heart that she named Tinkerbell.

The Berlin Heart is a portable pump, a type of ventricular assist device, that helps children with damaged hearts pump blood until they can be transplanted.

Bella was diagnosed with cardiomyopathy when she was 16 months old and has spent time at Riley before, but nothing like this. Last March, she acquired an infection that landed her back in the hospital.

“It hit her hard, so she needed the Berlin Heart,” Sutton said. “Over the years, we’d pack a bag and be at Riley for a week, maybe two, then head home. Not this time.”

Cardiologist Dr. John Parent recommended she stay at Riley as her heart weakened. She’d had another scare about two years ago, a bout with pneumonia not long after her father, Zeb Sutton, passed away from a heart attack at the age of 44.

That’s a lot of heartache for this family, but Amy Sutton said she and Bella talk about him a lot and look at pictures to keep his memory alive.

Besides the nurses, Bella has made friends with other patients on the floor. She’s on the outs with her bestie, Emmitt, at the moment, she said, because he stuck his tongue out at her.

“They are like brother and sister,” her mom laughed. “They have their good days and bad. After a while here, you make new family members. I’ve made friends along the way with some of the moms, and the kids will see me and say, ‘hi Mom.’ It’s like I have more kids. After a while, you just go with it.”

She is grateful to the nurses who devote their time to Bella during the week when she is not able to be at Riley.

“They have gone above and beyond. They play with her, do her hair … and tell me when she acts up.”

Those nurses have a special fondness for all of their heart warriors, including Bella, and they try to make the days fun when they can with dance parties, games and trips to the Child Life Zone.

“She is so great,” Bracey said. “She is well-mannered and fun to be around. I had her and Emmitt on my lap at the desk last weekend watching a show.”

As she sees some of her new friends leave with their new hearts, Bella gets a little sad, her mom said, wondering when it will be her turn. But they make the best of it, especially on the weekends when mom and daughter are together again.

“I want to be a nurse here,” Bella decides, “and I want to be a mom.”

Learn more about organ donation here.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Brynn Rittman is just 13, but at 5-foot-8, she’s growing up fast. While she and her older brother might not reach their dad’s height of 6-3, it’s definitely a competition to see who gets closest.

An eighth-grader, Brynn plays softball, volleyball and basketball, with soccer and swimming mixed in for good measure.

Otherwise healthy, the Indianapolis girl started noticing that she stood a little crooked when she looked in the mirror. Her tops didn’t fit quite right either.

It was a trip to the pediatrician last fall that led her parents, Mike and Brittany, to take her to a specialist for a scoliosis screening. Sure enough, X-rays showed the teen had varying degrees of curves in her spine, leading to uneven shoulders and pain.

While scoliosis, which affects 2% to 3% of the population, can appear in infancy or result from other conditions including cerebral palsy, Brynn’s is considered idiopathic, meaning there is no known cause.

Fortunately for her, she is taking advantage of a specialized form of physical therapy at Riley Children’s Health designed to freeze – and even correct – her curve before it gets worse, avoiding the need for more invasive treatment, including surgery.

“We have many cases where we actually start to straighten and correct the spine, but to set realistic expectations I always tell my patients the number one goal is to freeze it, because scoliosis is a progressive condition,” explained Brittney Galos, a Riley physical therapist trained in the Schroth Method.

Schroth, named for a German woman who had scoliosis herself in the early 1900s, uses exercises customized for each patient to return the curved spine to a more natural position. The goal of Schroth exercises is to de-rotate, elongate and stabilize the spine.

That’s what Brynn is working on during weekly therapy sessions at Riley, where Galos coaches her through multiple stretching, rotating and breathing exercises, all designed to address her specific spine curves.

“This is pretty much my social hour,” Brynn said, despite the work she puts in. “Me and Brittney are besties.”

But the therapy doesn’t end at Riley. Brynn goes home with a binder packed with information and exercises that she is to work on between appointments.

That buy-in from kids and their parents is crucial, said Galos, who is determined to broaden awareness of the benefits of the Schroth Method for some patients in hopes that pediatricians and other medical professionals and parents know that it can help.

“Most of my kids’ curves show up just prior to and into puberty, and usually identification is slow,” she said. “Our goal is to get to these girls (females are disproportionately more likely to have scoliosis), apply these exercises and stretches and get that curve to pause in its tracks. We know if we can keep a curve under 30 degrees by the time a kiddo is done growing, it won’t advance the rest of their life.”

Brynn has three curves that range from about 20 to 36 degrees, and that makes her eligible for this kind of physical therapy. For perspective, anything below a 10-degree curve is considered normal, Galos said, while anything above 45-50 likely would require more aggressive treatment, up to and including surgery.

It’s been about three months since Brynn started therapy, in addition to wearing a brace, and she’s already grown an inch, said her dad as he watched his daughter go through the exercises under Galos’ careful eye.

“When you find out your kid has scoliosis, you’re combing the Internet … everyone’s got a different opinion,” he said.

He and his wife initially struggled with the decision to put Brynn in a brace in addition to seeking out therapy. Different doctors, different ideas.

“But Brittney (Galos) deals with scoliosis all day every day, and she said absolutely she should wear a brace,” he said, adding that it was a relief to be assured of the right path forward.

Education surrounding scoliosis is not what it should be – whether in medical school or physical therapy school, Galos said.

“Our training in PT for scoliosis is like two slides with the most horrific curves.”

So, when a provider identifies a milder curve, they might be inclined to take a wait-and-see approach, not knowing that therapy is an option, Galos said.

Unfortunately, that sometimes means by the time they get to her, their curves are already near surgical level, “and then we’re trying to play catch-up and it’s a lot harder.”

“The worst feeling is when a kid comes in, the parents did all the work to get here, and the curve is already 45 degrees and it’s often too late. It’s not impossible, but it’s not easy. There is no room for error.”

Of the 20 to 30 patients she sees each week, about half are kids who are receiving treatment using the Schrock method, and most come to her between the ages of 11 and 14.

For Brynn, the therapist said, her No. 1 goal is to keep her in the 30-degree range until she’s done growing, which for most kids is about two years after they hit puberty.

While it’s common for medical professionals to try to stay in their own lane, Galos said she tries to bridge that gap by educating her peers about the benefits of physical therapy in some cases.

“I think every kiddo has their own story and their own needs, and even the same curve might need two different things depending on the kid.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Each year, Reason to Dance, Reason for Hope brings together local “celebrities” and their partnered professional dance instructors for a ballroom dance competition that not only entertains, but changes lives.

Based on the popular TV show “Dancing with the Stars,” this event benefits the Riley Children’s Foundation, supporting both the Child Life Program at Riley Children’s Health and the Herman B Wells Center for Pediatric Research at the Indiana University School of Medicine. Season 9 of Reason to Dance will take place on March 15 at the Indiana Roof Ballroom in Indianapolis.

One of this year’s celebrities, Dr. Emily Sims, a pediatric endocrinologist at Riley and a physician scientist at the IUSM Center for Diabetes and Metabolic Diseases and at the Wells Center, is ready to take the stage.

Her work focuses on type 1 diabetes research, aiming to improve the way the disease is diagnosed and treated. When approached to participate in Reason to Dance, she said she saw it as an opportunity to support a cause she deeply believes in. Having attended the event last year, she was inspired by the story of its founders, the Greeleys, who started this event after receiving impeccable care for their child at Riley.

“The Greeleys said the care they received at Riley changed their lives, so they wanted to give back by building an event around something they really loved – ballroom dancing,” Sims explained. “I felt like this was something I could really get behind because I think all of us who are associated with Riley feel like it’s an incredible place!”

Over the past eight years, the event has raised nearly $1 million, with hopes of surpassing that milestone this year.
While Sims is no stranger to challenging work and honing her scientific skills, ballroom dancing is something completely outside of her comfort zone. To prepare for the event, she and her dance partner/coach, Mike DeSante, have been training weekly at Arthur Murray Dance Studio in Carmel, Indiana.

“In my everyday job I have done a lot of training and feel pretty confident about the skills I’ve developed and use every day,” Sims shared. “It has been really humbling to have to start learning ballroom dancing from the very beginning!”

As a little teaser, she revealed that one of their two routines features a performance to Post Malone’s “Sunflower” from the Spider-Man: Into the Spider-Verse soundtrack.

The awards for the competition include:

• The Riley Children’s Choice Award for the dancer who earns the most votes from Riley kids.
• The Runner Up award for the dancer who has the second-highest combined judges’ score.
• The Judges’ Choice award for the celebrity with the highest combined judges’ scores.
• The Grand Champion award for the celebrity who raises the most money.

All proceeds benefit the Riley Children's Foundation, impacting and improving the care that Riley kids receive. The Child Life Program at Riley helps children navigate scary procedures and hospital stays, making a big difference in their experience. Meanwhile, pediatric research at the Wells Center plays a crucial role in advancing treatments that improve and save lives.

“I have had the opportunity to see firsthand how working in diabetes research is contributing to changing the way that we diagnose and treat patients with type 1 diabetes,” Sims said. “Donor funds such as these are especially critical as they tend to fund high-risk, high-reward projects, which often end up being the truly transformative projects that break down existing paradigms.”

To show your support for Sims and the Riley Children's Foundation, visit https://reasontodance.org

About pediatric headaches

Symptoms

If your child has headaches, it is important to consult your primary care provider. They will talk about the features of your child’s headache and ask important questions, such as where it is located, how often it occurs and how long it lasts. In addition, they will assess the associated symptoms, such as:

• Nausea
• Vomiting
• Light sensitivity
• Sound sensitivity

Dangerous signs

Aside from the more common symptoms, the dangerous signs of a headache might include:

• Weakness or numbness
• Headaches that are positional
• Headaches that are worse laying down or sitting up
• Headaches when pregnant
• Headaches when you have a sudden onset

“Most of the time, based off talking with you and doing a thorough physical examination–this is checking your brain, your cranial nerves, your strength, your sensation and your walk–your primary care doctor can tell if your headaches are dangerous or not,” Dr. Miller said.

Depending on your child’s symptoms and signs, your provider can determine when to send your child for further testing.

Testing and Treatment

Often, pediatric headaches do not require any testing, especially if there is a strong family history of headaches. The two common types of headaches–migraines and tension-type headaches–also do not require any testing. For children with more frequent headaches of more than 2-3 times per week, your provider may recommend everyday medicines to prevent headaches. They can also prescribe medicine to rid the headache in the moment.

Lifestyle Modifications

Simple lifestyle changes can significantly improve headache management. For example, your primary care provider may recommend hydrating well and implementing proper sleep hygiene.

Expert team of neurologists

If your child’s headaches continue or your primary care provider needs additional assistance, our pediatric neurologists at Riley Children’s are ready to support you.

“If your primary care doctor is unsure or needs extra help, they can always refer to us,” Dr. Miller said. “We’re the neurologists at Riley Children’s Health. We’re happy to see you, especially if your primary care doctor needs help.”

Learn more about pediatric neurology at Riley Children’s Health.

"I bought boxes upon boxes," she said, reflecting upon that impactful moment in her recent history.

February is Black History Month, a time intended to celebrate the stories and culture of Black people in America.

“Black history is not about just 28 days. Black history is real, it's a lifetime,” she said. “It happened … no matter what the books or laws or people say. History is history.”

Boone’s history began in Gary, Indiana, as the middle child of three siblings who adored her grandparents.

“A grandmother's love is what I was raised on, and it put me where I am today; my grandparents are my heartbeat for sure."

She went to college in Evansville, a world away from Gary, she said, then decided to split the difference and make her home in Indianapolis, where she lives with her tiny dog, Eva Ann. She worked 13 years for the Indiana Department of Child Services, before coming to Riley in 2020.

Boone said she didn’t see a lot of diversity, especially in leadership positions at Riley. When she started this job, it was May 2020, amid the COVID-19 pandemic and the murder of George Floyd by a Minneapolis police officer. She saw an opportunity to make an impact.

“Everything that was happening in the world led me to starting our first Riley employee resource group within our department,” she said. “I, along with other people, needed a safe place to process the things that were happening in the world. Because the world doesn't stop in between these Riley walls.”

Now primarily working with patients, families and team members in the pediatric intensive care and burn units, she believes she has found her home at Riley.

“My primary focus at DCS was protecting children … coming to Riley my primary focus is patients and families and more supportive crisis intervention.”

Two different roles but with the same goal of caring for and protecting kids and families, she said. Throw a pandemic in there, where you are dealing with a lot of death and grief, and it takes it to another level, but she has zero regrets.

“Through my experience, I’m blessed to say I think I’m exactly where I’m supposed to be. It is my purpose, and although sometimes it’s heavy, it doesn’t feel like work.”

One thing that makes it easier is the spirit of collaboration on the Riley team, she said.

“I thought there might be this hierarchy of doctors and nurses and they would tag in social work when they needed us, but I feel very much a part of the team,” Boone said. “They rely heavily on my recommendations and/or opinions. And when we as team members are struggling, we offer safe spaces for each other, and it means the world to me.

“I had heard about all the good things at Riley, and I came here and drank the Kool-Aid,” she added. “I absolutely love Riley. We are a true team.”

Boone, an IU Health Emerging Leader and Sher Lee Sommers Leadership Fellow, is a self-described change agent who always knew she wanted to help children.

“I run toward the risk, and I run toward the danger and the trauma. I am comfortable being uncomfortable. I thrive in crisis intervention,” she said.

“In all things, I think I lead with compassion. I have to remind myself I'm a little black girl from Gary, Indiana. I'm not far removed from being a patient or being a family member of a patient. I always have this concept of it could have been me and it still could be me.”

In her professional and personal life, she is guided by the belief that people are human first, “and we should listen and respond without judging. It takes nothing to lead with kindness and it goes a long way.”

Love is all around at Riley Hospital for Children, but what better place to showcase it than the Heart Center, and what better day than Valentine’s Day?

Samantha Franczak and Bret Brumfield, who are getting married in September, both work as registered nurses on the unit, as do Jake and Maddie Schrader, who met in middle school and have been married for a year and a half.

The four all work the night shift, sometimes in neighboring patient rooms and sometimes at opposite ends of the unit. They all have a heart for heart patients.

“We have patients from a day old to 40 years old sometimes,” Brumfield said. “That’s pretty unique.”

“A lot of these kids need multiple surgeries, so we get to see them at different stages of life,” added Franczak.

The patient population and the team captured her heart when she rotated through the Heart Center during clinicals in nursing school. Brumfield had a similar clinical experience, but the bonus was that Franczak was already working there.

The Schraders, who are expecting their first child in June, say working together is ideal because each understands what the other is going through, especially on hard days.

“It makes decompressing a lot easier,” said Maddie, who loves making connections with patients and families.

“A lot of our kids are waiting for heart transplants, so we get to know them because they’re here for a long time.”

As she talked, Ja’Karr Ashley came up to say hello. Ja’Karr has been on the unit for several months waiting for a transplant. He has wiggled his way into the hearts of the entire team with his winning smile and friendliness.

“He’s a lot of fun,” Maddie said, while Jake quizzed the 12-year-old about his skill at video games.

“I worked as a patient care tech on this floor, and I loved all the staff and the patients,” Jake said, explaining why he chose to join the Heart Center team as a nurse. “It’s like a family.”

Both couples happen to have Valentine’s Day off, but they don’t have big plans.

“We’ll probably go to one of our favorite restaurants and spend the rest of the night at home with our dog,” Brumfield said.

The Schraders say they’ll likely do a date night at home, then go out for dinner when it’s not as busy.

Owen Lower looks like a pint-sized punk rocker. Put a tiny guitar in his hands, or drumsticks or maracas, and he’ll even play the part.

The toddler’s spiky hair comes naturally, his mom says. She can try to tame it with a brush, but that’s not happening today. He is still recovering from a nasty bout with several respiratory illnesses that hospitalized him for a week.

Owen is at home in Noblesville now with his parents, Dustin Lower and Katy Preidt, his big sister, Lyla, his nurse and an assortment of people hoping to share his story with the wider world.

Cute as he is, 15-month-old Owen had a traumatic entrance into this world. He was diagnosed in utero with a giant tumor on his neck called a cervical teratoma, an extremely rare form of a germ cell tumor that is usually benign but can obstruct a baby’s airway, resulting in an accumulation of fluid that can affect growth and cause preterm labor.

“We tried to not go down the Google rabbit hole,” Preidt said, once they learned what they were facing. “But the pictures are very scary.”

The mass was actually larger than their baby’s head, so a multidisciplinary team of doctors and other specialists with Riley Children’s Health knew his delivery would be anything but normal.

In fact, there was no guarantee that Owen would survive delivery. The tumor was interfering with his airway, so it was crucial that the medical team address that during delivery while the baby was still attached to the placenta.

While his mother was under anesthesia, doctors at Riley partially delivered the baby via C-section and intubated him to ensure he could breathe before cutting the umbilical cord and bringing the rest of him into the world.

Preidt still remembers waking up to one of those doctors squeezing her hand and telling her that little Owen had survived.

It was a beautiful moment, one that neither Preidt nor her husband dared to expect, but they could hope.

“We tried to remain positive but also realistic,” Preidt said. “The outlook wasn’t great.”

They hadn’t set up a nursery yet, she said, deciding it would be better to set it up after the fact rather than have to take it down if the outcome was poor.

Owen was whisked away to the NICU that November day in 2023 and later underwent surgery to remove the tumor.

“We were so preoccupied with his birth that we didn’t take time to totally understand the NICU,” Preidt said. “That was harder than I expected. We knew if we were in the NICU that was the best-case scenario for us, but a lot of parents didn’t expect to be there.”

The NICU team was phenomenal in every way, she said.

“We can’t say enough great things about the NICU there at Riley. Such kindness and support. They showed us such wonderful compassion.”

And tumor removal day was a happy day for the couple.

“They were able to remove it in one big chunk,” Preidt said. “We had the best team of doctors, but also luck on our side. I was lucky to have amazing doctors who I could trust with everything.”

Dr. Melinda Markham, medical director of the Fetal Center at Riley and an attending neonatologist, was part of that multidisciplinary team.

Despite everything thrown at the couple during the last half of Preidt’s pregnancy and the months that followed, “they did a heroic job of being calm through all of it,” Dr. Markham said.

“They had great hope for Owen, but they were ready to accept whatever the outcome could be,” she added. “We had a great partnership with them and built up a sense of trust … where there is no question that they can’t ask.”

She and Dr. Hiba Mustafa, maternal-fetal medicine specialist and surgeon at Riley, were among those who gathered to celebrate with Owen and his family when they released a Riley red wagon bearing his name into the Downtown hospital fleet last month.

“He looks fantastic,” Dr. Markham said. “That’s what we hope for – not only to take a baby home but a baby who’s going to thrive. Owen is thriving.”

Dr. Mustafa, who monitored Owen’s growth closely in the womb, said it took extraordinary planning and collaboration among many committed Riley teams to care for Preidt and her baby before, during and after delivery.

Once he was safely delivered and his mom was recovering, there was a collective sigh of relief in the operating room, she said.

And now, 15 months later, Owen is a happy and healthy baby, with “a spirited and fiery personality,” his mom said. “He adores dinosaurs, cars and Elmo, and nothing makes him happier than kisses from our dog and hugs from his big sister.”

Owen continues to build his vocabulary and feeding skills, while his sister dotes on him. Lyla even has a miniature IV pole like Owen’s that she uses when caring for her assortment of baby dolls.

“Taking care of babies is her passion,” her mom said.

The family has their routine down now, but leaving the relative safety of the NICU was hard in the first few weeks.

“We’d had this team of people at our beck and call helping Owen stay safe and healthy,” Preidt said. “Then coming home and trusting ourselves to take care of him was very scary.”

But looking at her son now, she said, she feels “an overwhelming sense of joy and completeness.”

“I once tried to prepare my heart for the possibility of losing him, and I am endlessly grateful that he is here with us. He fills our days with laughter and love – he’s hilarious, opinionated and incredibly cuddly.”

Gratitude runs deep for this couple.

“We are thankful for all the people who worked so hard to bring him into this world,” Dustin Lower said. “Our lives wouldn’t be the same without him.”

And while they still worry, especially about how their son will adjust to daycare this summer – and all the germs that come with that – those concerns feel much smaller compared to the life-and-death fears they once faced.

“Today, we get to focus on watching him grow,” his mom said, “and for that, we are forever thankful.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Ronda Adamo remembers the fear that took hold of her heart when she learned that her grandson had serious congenital heart defects.

Brandon Halsey was born 10 years ago in northern Indiana and had to be airlifted to Riley Hospital for Children shortly after birth when it became clear that there was something wrong with his heart.

Diagnosed with Epstein anomaly, he underwent open-heart surgery as a baby to correct multiple defects and has had a challenging few years but is doing well today, said Adamo.

This year during Congenital Heart Defect Awareness Week, she is sharing an essay she wrote a few years ago to put words to the feelings she and so many other families have experienced as they navigate the complicated world of pediatric heart conditions. Following are excerpts from her essay.

“Today I tried to imagine a world without congenital heart disease.

It shook me to my core to think of it.

Just imagine never hearing those awful words, ‘There is something wrong with his heart.’ Or life-altering words, ‘He may not live.’

Imagine never knowing how much an echocardiogram can tell you about your baby’s heart.

Imagine not understanding what an EKG looks like or what those squiggly lines mean.

Imagine never having to watch a team of doctors flood into your child’s room to shock their tiny little heart back to a normal rhythm.

Imagine never hearing the call for a code blue for your child’s room.

Imagine never watching machines keep your baby alive.

Imagine not having to watch your child play and wonder how long his heart will hold up.

Imagine just for a minute what it would be like…”

Adamo, who for years volunteered with Mended Little Hearts, can’t imagine what it would be like to be outside the world of CHD. She wishes she could, but the words she wrote a few years ago still ring true today, she said.

“Brandon had a really rough start. I was distraught at the time. There is no anger that he was born like he is, but it sure would be nice to be in that other world,” she said.

A world without CHD.

Even after his surgeries, she worried.

“Frequently, he would be running and playing, and I would be terrified,” she said. “I wondered, ‘Can his heart do that? Can he handle it?’ We found his limits. We know what he can and can’t do now, but when he was younger, I’d wonder, ‘Is today the day?’ I think about it a lot.”

Brandon, 10, remains under the care of Riley cardiologist Dr. Adam Kean. He is dealing with some fluid retention around his heart, so he comes in to see the cardiology team at Riley every six months for the time being.

“We’re not dealing with the big and bad right now, so it’s a little less traumatic,” Adamo said.

But she knows there are families coming to grips with scary diagnoses and treatment options right now, and she hopes sharing her experience might offer some hope.

“When Brandon was little and going through the worst of the worst, we were sitting there for days on end at Riley and feeling very alone,” she said.

She saw a glimmer of hope in the early days of spring.

“I remember very clearly walking through the CVICU and I saw a bigger kid, maybe 13 or 14. Usually, all I saw were babies there and sometimes they didn’t go home. It hit me then that they can live. That physically took me to my knees,” Adamo said.

“That was so profound for me to realize they can live. And at that point, I realized that sharing Brandon’s story can help other people because there is hope, and that is the best message of all.”

Riley Children’s Health is consistently ranked among the nation’s leading pediatric cardiology and cardiac surgery programs by U.S. News & World Report.

“A bunch of us were staying at apartments on 10th Street and our manager sent a four-wheel drive to get us. Six of us piled in the four-wheel drive that got stuck even before it got out of the apartments and we had to dig that out,” she chuckles. “We got into Riley to relieve the nurses that had been there all night. We slept on the floor in the new unit that was being created. I will never forget that time and just the camaraderie.”

Kilpatrick strolled through the storied stained-glass entrance of Riley Children’s Hospital in May 1977 to start her career as a nurse in the PICU. She’s seen so much during those 47 years serving parents, children and families of Indiana.

Kilpatrick says she always wanted to be a pediatric nurse. “I babysat a lot when I was in high school and I loved kids,” she says. She was bedside for the first two decades and then as an educator in the PICU for 19 more years. She’s been handling discharge phone calls for patients the past eight years. At the end of February, she'll retire to spend time with family and friends, read, take some nature walks and maybe even volunteer at Riley.

She says it’s the kids, first and foremost, that make Riley such a special place. “It’s the spirit of the kids, that’s the best part. Helping out the children, working with their families—that’s the best part of Riley.”

Decades of medical progress

She’s seen decades of medical progress, too, during her career.

"We witnessed incredible advancements in cardiovascular surgery and cardiology care, including starting our cardiac transplant program," she says. "Phenomenal innovation and improvements marched forward within each service Riley has to offer from oncology to neurosurgery, from metabolism to general surgery.”

She’s seen the positive impact of vaccines on patient care with kids who early on in her career would contract Haemophilus influenzae meningitis before a Hib vaccine was introduced or how research identified the correlation between Reye syndrome and children under 18 getting aspirin.

She says kids coming back to visit when they are better is a true highlight of all her memories at Riley. “But also, along the way, just the relationships I had, the friends I got to have, they’re lifelong friends from work. And we shared not only taking care of patients, but our lives and we grew up together.”

“I cherish the times I spent growing up at Riley in my career. I've had support all along the way with every manager, respiratory therapist, unit secretary, physician, patient care assistant, housekeeper, pharmacist, cafeteria staff, fellow nurse and so many others,” she adds.

Finally, she says, “If you like taking care of children, this is the place you want to be and you will get joy from your work. You'll meet beloved, darling children with spirits that soar and their parents. You'll meet wonderful colleagues along the way because they feel the same way. Everyone does their best and they put the children first.”

It was a week and a half before she would undergo spinal fusion surgery, and Shae AnaBella Scott – Bella to her friends – was fidgeting with a stress ball and showing off her impressive blue press-on nails.

She’s talking about her life with two diagnoses that have meant spending a lot of time at Riley Hospital for Children, but she smiles shyly from the wheelchair she’s sitting in – back straight and head secured by a halo traction device.

Thirteen-year-old Bella has been a Riley patient since about the age of 3. That’s when her mom, Aimee Scott, noticed strange spots on her daughter’s skin and took her to the pediatrician.

Bella was subsequently diagnosed with NF1 (neurofibromatosis type 1), a genetic disorder that causes the growth of noncancerous tumors on nerves throughout the body. On top of that diagnosis came another: scoliosis – an abnormal curve of the spine.

Over the past 10 years, Bella has been fitted with body casts, metal rods, a brace and now halo traction – all designed to slow or correct the 90-degree curve in her spine.

The traction device looks uncomfortable, but Bella says it’s really not. She even sleeps in it.

“It’s actually really comfy,” she said.

Keeping her company on 8 East during the three weeks she must be inpatient and wearing the device before surgery has been a rotating cast of loved ones, including her mom, dad (Shamus Scott), stepmom (Cassidy Scott), grandmother and a family friend.

Riley orthopedic surgeon Dr. Tyler Christman has been her doctor for several years, putting in her first set of growing rods when she was 6, after a series of body casts that were designed to keep her spine aligned.

“Bella has been managing her scoliosis here at Riley Hospital since she was 3 years old, and she has done remarkably well,” he said, describing her as “strong and brave.”

Fast forward to Thursday, Feb. 6, and he would be the one performing spinal fusion surgery as hopefully the last step in the treatment of her scoliosis. While a relatively low percentage of kids with scoliosis require spinal fusion surgery, Bella’s condition was aggravated by the NF1.

“It was challenging, but it went very well,” the surgeon said Friday, a day after the surgery.

Challenging due to the NF1, which turned a typical four-hour surgery into an eight-hour trip to the operating room.

“The type of scoliosis Bella has is often challenging to treat surgically because of the neurofibromas (small tumors) that are around the spine and affect the quality of the bone,” Dr. Christman said.

“They are up against the vertebrae, and that changes the shape of the bone itself. They cause aggressive deformity at the apex of the curve with a lot of rotation around the neurofibromas, so the trajectory of the screws is more challenging and the available safe zone to place the screws is much smaller than normal.”

On top of that, Bella is tiny. The sixth-grader stands about 4 feet, 7 inches, and weighs 65 pounds, so Dr. Christman said he and his team modified some of the instruments for the procedure and used a smaller set of implants for her.

But overall, he is pleased with her progress.

“Our goal was to fuse her spine to prevent any further (curve) progression,” he said. “We were able to do that. We were able to use implants that should give her stability. Her shoulders are nice and level to her hips. She’s not leaning to the side anymore. And we were able to de-rotate some of the scoliosis deformity to give her a more contoured profile.”

Now free from the halo traction device, which didn’t slow her down around the halls of the hospital, Bella is recovering from surgery at Riley for a few days but should be headed home soon.

“We’re excited to get this done and be good for the start of junior high,” Cassidy Scott said.

Bella, meanwhile, is excited to get back on the volleyball court and back in the swimming pool as she shakes off the memory of the body casts, lengthening rods and braces that got in her way before surgery.

To pass the time at Riley as she waited for surgery, Bella began keeping a journal – with different pens signaling different moods – and she watched a lot of “Gilmore Girls.”

“Things haven’t always gone the way we think they’re going to go, but she’s always positive,” Scott said. “She takes everything in stride. She’s tough.”

Dr. Christman agreed.

“That positive attitude has certainly helped her through the challenges of casting and bracing and multiple surgeries for her spine,” he said. “She’s definitely a very strong young girl."

There’s one thing Dr. Christman can’t help her with, however: French braids.

He tried fixing her hair in the operating room before he put the halo traction device on her head a few weeks ago, but she came out with three wild pony tails.

“My daughter just turned 10, and I’ve been trying my best to learn how to French braid her hair for a long time,” the surgeon said. “For whatever reason, I struggle with that. I’m still learning,” he chuckled.

For now, he will stick to surgery and leave hairstyling to someone else.

“We fused (her spine) with the maximum amount of correction that I think was safe and that the bone quality and the curve rigidity would allow for,” he said. “With it fused in place now, she ideally will have no more surgeries for her spine, assuming everything continues to go well.”

Bella also sees neurology and ophthalmology at Riley, so she won’t be a stranger, but she and her family are relieved to have this latest procedure in the rearview mirror.

“Riley has been wonderful, and Dr. Christman has been great,” her stepmom said. “I think we’re seeing the light at the end of the tunnel with the fusion. She’s ready for it to be done.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

A board-certified surgeon with over three decades of experience, Dr. Rodefeld knows firsthand what it means to lead impactful work for the field of pediatric heart surgery. That is why he was recently awarded the Earl Bakken Scientific Achievement Award, a distinguished honor representing those making significant contributions to cardiothoracic surgery.

"This award is a tremendous honor, and it is deeply humbling to be included among a group of exceptionally accomplished past awardees," Dr. Rodefeld said. "They are giants in the field, and many were my mentors who significantly impacted my clinical and scientific work. Recognition from colleagues and peers is profoundly rewarding and fuels my continued passion and enthusiasm."

The award recognizes Dr. Rodefeld’s innovative development of the Fontan pump, a medical device aimed to revolutionize care for patients with single-ventricle heart defects. This small, implantable device, which is supported by multiple grants from the National Institutes of Health, works by restoring a crucial power source to the circulatory system, meant to simulate the role of a missing right ventricle.

While single-heart defects require a multi-stage surgical procedure that involves reconfiguring the heart’s circulatory system, the need to prioritize it is always growing. By developing the Fontan pump, it uses a spinning disc mechanism to help move blood from the veins into the lungs for oxygenation, improving overall blood flow augmentation. In turn, this solution ensures greater circulatory function for patients with single-ventricle heart defects, without the need of a complex surgical operation.

“The operation right now is not curative—it doesn’t 100 percent resolve the problem,” Dr. Rodefeld said. “It gives the patient a situation they can live with relatively long-term, but eventually other problems will creep up and become a major problem.”

Under research since 2010, the novel blood pump has served as a significant stride forward for patients with complex heart conditions. For Dr. Rodefeld, this award is just one deserving tribute to his ongoing determination to propelling pediatric heart surgery.

Established in 1999 through a grant from Medtronic, Inc., the Earl Bakken Scientific Achievement Award recognizes individuals who have advanced the field of cardiothoracic surgery and patient quality of life. Named after Medtronic co-founder Earl Bakken, who developed the first wearable artificial pacemaker, the award was honored to Dr. Rodefeld in January at The Society of Thoracic Surgeons’ 61^st Annual Meeting.

About pediatric cardiothoracic surgery at Riley Children’s

Dr. Rodefeld and the pediatric cardiothoracic surgery team at Riley Children’s lead advanced heart surgery to treat children with rare and complex cardiovascular diseases. Among many accomplishments, key distinctions include:

• One of the nation’s most experienced centers for the Ross procedure
• Seven decades of experience with right ventricular outflow tract reconstruction
• Pediatric and adult congenital transplant program accredited by the Adult Congenital Heart Association

Learn more about cardiothoracic surgery at Riley Children's.

When your little boy is having trouble breathing, you act. That’s what Brianna and Sean Presnell did Monday morning when their son’s cold turned into something worse.

They rushed 2½-year-old Maverick to the emergency department at Riley Hospital for Children, where he was diagnosed with flu A and RSV, two serious respiratory illnesses, particularly for a medically complex child such as Maverick. He was admitted to the hospital and spent two nights inpatient before being discharged Wednesday.

Maverick, who spent the first 212 days of his life at Riley, went home in December 2022 with a trach, ventilator and oxygen, but he had been doing so well lately that he was off the vent and only required extra oxygen at night.

His medical challenges started with a congenital diaphragmatic hernia, which can push organs up into the chest, compromising heart and lung function. He had surgery for that, as well as for a heart defect, but his lungs never fully recovered.

Still, for the past two years, he’s been relatively healthy and quite happy as he’s grown into an active 2-year-old. In fact, this week’s hospital admission was the first since he went home as a baby more than two years ago.

“He was requiring more oxygen support than normal,” Maverick’s mom said. “That’s the main reason we brought him in.”

She’s calm now, but it was very scary to see her little boy struggling to breathe, especially the night before they brought him to Riley.

“He sleeps in our room since he’s still on monitoring machines, but the night we decided we were going to Riley in the morning, we all slept in the living room on the couch together,” she said.

Kids with respiratory illnesses, including flu, RSV, adenovirus and Covid, continue to flood the ED at Riley and other hospitals this time of year.

“We’ve been incredibly busy,” Dr. Cory Showalter, medical director of Riley’s ED, said Wednesday. “In fact, the past two days are the busiest we’ve had, with 250 ED visits each day.”

Yet, he added, “Everyone is doing an awesome job helping each other.”

Those visits of course include trauma and other illnesses, but a large number are respiratory illnesses, not unusual for winter, he said.

To avoid wait times in the ED, Dr. Showalter advises families in non-emergency situations to work with their primary care physician first to determine the best plan of care.

Options as noted in the accompanying graphic below also include virtual visits and urgent care locations for non-life-threatening conditions.

Emergency department visits should be reserved for life-threatening conditions, including heavy bleeding, difficulty breathing, loss of consciousness, poisoning, seizures, severe abdominal pain, serious burns, head trauma, stroke and visibly broken bones.

“We are here to help if you need us, but there may be delays as we work hard to take care of many patients,” the emergency medicine physician said. “If your child is ill, please work with your primary care physician to determine the best plan for care.”

As 16^th birthdays go, this one is definitely unusual.

Certainly not how Brilea “Queen Bee” Southard planned to celebrate.

But here she is, marking this momentous day in the hospital. The same place she celebrated her 15^th birthday and all the days in between.

Brilea has been inpatient at Riley Hospital for Children for 410 days straight. She arrived via LifeLine helicopter the early morning hours of Dec. 21, 2023, after a devastating car accident injured her and several members of her family.

The Terre Haute family had been out looking at Christmas lights on Dec. 20 when an oncoming driver collided with their minivan.

Brilea, sitting in the vehicle’s middle seat with her mom, was critically injured, though she didn’t know how serious it was at the time. She had suffered an aortic dissection (a tear in the inner layer of the aorta, the main artery that carries blood from the heart to the rest of the body), in addition to multiple broken bones and crushing injuries to her abdomen.

Her little brother, Grayson, who was seated in the minivan’s back row along with a family friend, was in another Riley Hospital room, suffering multiple fractures and a deep gash to his head. Their mom, Paula Allen, was airlifted to IU Health Methodist Hospital, where she would remain for 20 days recovering from serious injuries. The children’s grandmother, who had been in the front passenger seat, was airlifted to another Indianapolis hospital.

Their dad, Justin Allen, suffered a minor injury to his foot but was trapped in the wreckage. The family friend in the back seat also suffered minor injuries. Brilea’s then-22-year-old sister, Faith, who was not in the vehicle, was by her sister’s side in the days and weeks after the accident.

WHERE IS BUN BUN?

Brilea was the most severely injured, yet it was she who called 911 that night before crawling out of the crushed vehicle. She remembers being in the back of the ambulance that took her first to a Terre Haute hospital, but recalls little after that before waking up in the pediatric intensive care unit at Riley intubated and unable to speak.

In time, she would be able to write on a tablet what her voice could not say: Bun Bun.

Bun Bun is her affectionate name for a stuffed bunny that she has treasured since receiving it for her first birthday. Bun Bun was in the car that night. Family members were able to retrieve it and bring it to her in the hospital, where it remains today.

She would go on to have more than 25 surgeries, many led by Riley pediatric surgeon Dr. Cartland Burns.

“She had like a 4 percent chance of surviving, but by the grace of God and Dr. Burns, here she is,” Faith said.

“Dr. Burns saved her life,” Justin agreed, as he, his wife and Brilea’s siblings gathered to share their story.

SPECIAL DELIVERY

The surgeon is one of an army of caregivers at Riley who have walked this journey with Brilea and her family, all of them celebrating the milestones she has achieved.

Dr. Hank Knouse, a hospitalist covering the rehab unit and developmental pediatrics/complex care, is another. A physician with a soft heart, he left Riley one day to bring back chicken nuggets and a Coke Zero from Chick-fil-A for Brilea when she was able to eat.

“I dropped it off and ran,” he chuckled, not wanting to make Brilea feel awkward. “Every once in a while, I’ll do something like that for patients when I have time,” he said, “especially on the rehab unit when they are there for such a long time.”

It was a gesture that meant a great deal to Brilea and her family, but Dr. Knouse waves off any praise.

“All the grace goes to her,” he said. “She’s a rock star. To be as mentally tough as she is every day is impressive. She’s probably one of the most resilient people I’ve ever met, especially at her age. It’s been so impressive watching her and her family go through the ups and downs but never give up … after what can be a life-ending injury.”

“He’s that great of a doctor,” Justin continued about Dr. Knouse. “He’s also the one that advocated for her to go to Taylor Swift’s concert. He’s kind of a rock star himself.”

That’s right, the one and only time Brilea has left the hospital since December 21, 2023, was to join tens of thousands of Swifties for one of the megastar’s Indianapolis shows in November, thanks to tickets donated to the Riley Children’s Foundation.

SWIFT MANIA

Accompanied by Riley team members and her mom, Brilea met that moment with all of the joy and energy she could summon, basking in the glow of the lights, the music and the feeling of being “normal” for a few hours.

“I loved watching Taylor’s dancers and the choreography,” said Brilea, a longtime dancer herself before the accident. “I remember the purple dresses the women wore. It was so pretty.”

“It was magical,” added her mom. “Watching her get dressed up and sing along with thousands of teenage girls … it was a fantastic night.”

And while Brilea loved the experience, she admits that her true music crush is pop singer/songwriter Benson Boone. A large poster of the young musician adorns a wall in her hospital room, which is also decorated with LEGO flowers she painstaking put together.

Mom and daughter missed his concert when he was in Indianapolis last fall, but they could see the lights of the Downtown venue where he was performing from a Riley window and listened to his music on Brilea’s phone to feel like they were there with him.

Music is a big part of Brilea’s life, as are movies and games with her family and special visits to the Child Life Zone, where she recently got to meet Mickey Mouse.

“ANGEL” THERAPIST

Also among that army of Riley caregivers is physical therapist Abby Dunlap, “an angel,” the family says, who has helped Brilea fight through intense pain as she first learned to move her legs, then walk again. Early on, doctors had prepared the teen’s parents for the possibility of amputation.

Several surgeries and months of rehab got Brilea up on her own feet again, but it was grueling, Dunlap recalls.

“I remember the first time she kicked her leg up in bed against gravity, everyone in the room started crying,” the therapist said. “And now she is walking the hallway with her mom.”

To help someone regain their independence is an exceptional feeling, she said, but make no mistake, Brilea did the hard work.

“Seeing her grow as a person and as a woman over the past year has been so wonderful,” Dunlap said. “She is one of the strongest, if not the strongest, kids I know. Knowing the pain I put her through for her to get better, how much she’s done and how far she’s come is truly an inspiration. It’s why we love what we do as therapists. She is our purpose.”

Brilea’s biggest obstacle in going home now is the injury to and loss of a portion of her intestines. The goal is to keep what she has left healthy enough that she may someday be able to eat and drink again and not rely on intravenous feedings.

That day last spring when she was able to enjoy chicken nuggets courtesy of Dr. Knouse was one of just a few days in the past 13-plus months when she could eat.

BIRTHDAY CAKE CAN WAIT

So, at today’s birthday party, there is to be no cake, but that’s all about delayed gratification in Brilea’s mind.

“My intestines are still not healed; that’s the reason we’re still here,” the teen said. “I’ll do whatever it takes to save them.”

Because the alternative – relying on intravenous feedings forever – is not a life she wishes to contemplate.

“I’d like to eat my wedding cake when the time comes and eat the gender reveal cake whenever I have a baby,” she said. “In the long run, it will be worth it.”

For now, she and her family feel overwhelming gratitude, even as they have faced many hurdles over the past year. The support they have felt from their Terre Haute community, as well as friends and strangers around the nation, has lifted them up, as has their faith, which they have clung to like a lifeline.

“The entire Riley staff has been phenomenal,” said Brilea’s mom. “Do we want to live in the hospital? No, but we have to take the time to heal. I don’t understand why we are still in this season, but that’s not my place to question. I believe her story is meant to be heard, for people to know what our God can do.”

Their faith has carried them, they said, when they have felt weak in body and spirit.

“I’m not strong,” Paula said. “I don’t have anything strong left in me; it is literally a daily struggle. I do believe she will be fully healed. I don’t think he is going to bring her through all of this and abandon her.”

A hopeful attitude has been a blessing for sure, even as it sometimes wavers.

“LIVING A MOVIE”

“We try to be 90 percent positive, but we allow ourselves to have a little pity party sometimes,” she said. “When I sit and think about it, I feel like I’m living a movie, something you read about, but this is actually happening to us.”

She reminded herself this past Christmas, as they faced the pain of another holiday in the hospital, that her gift was right in front of her.

“Brilea was on death’s doorstep last Christmas (2023),” she said. “We could have spent all this time grieving my child. But she is here, and we are here together.”

As they celebrate Brilea’s sweet 16 today, they look forward to the day when they will be together at home. Brilea, who loves the visits by Riley’s therapy dogs, hopes to get one of her own someday. She plans to name it Riley.

And that, Dr. Knouse said, is what makes Brilea so special.

“She’s always looking toward the next day and not worrying about the past. She just keeps moving forward.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

It's also dangerous for children to have high levels of caffeine consumption over a long period of time because their bodies are still developing. While caffeine can provide a mental and physical boost, studies show that it negatively effects children’s sleep, which can impact body weight, growth and mood.

When kids consume caffeine over the long term, they run the risk of having:

• Higher levels of stress hormones
• Irritability
• Increased cravings for more caffeine
• Withdrawal symptoms when they stop caffeine
• Greater difficulty limiting other substances, like nicotine or alcohol

The American Academy of Pediatrics (AAP) says kids should avoid all caffeinated and sugary drinks. Instead, kids should drink water, which hydrates the body, or milk, which offers important vitamins and nutrients.

While it’s ideal for kids to avoid caffeine until the age of 18, it’s reasonable to set a limit for older kids. There are guidelines for children ages 12 to 18 that suggest a limit of 100 milligrams of caffeine per day, which is about two cans of soda or eight ounces of coffee. (Adults should limit caffeine intake to 400 milligrams, which is about two to three cups of coffee a day.) However, caffeine can be found in places you might not expect.

Common sources of caffeine

More than 70% of children in the United States consume caffeine each day. When you think about caffeine, beverages like coffee, tea or soda probably come to mind. While your kid may not drink drip coffee out of the pot at home, teens and pre-teens are increasingly drinking flavored coffee and energy drinks. These two beverages have the highest amount of caffeine available: coffee delivers 113 to 247 milligrams of caffeine and energy drinks contain 41 to 246 milligrams (compared to 23 to 83 mg in a soft drink or 37 mg in green tea.)

The AAP says drinks like soda, lemonade and energy or sports drinks also increase kids’ risk for excessive weight gain, tooth decay, heart problems, diabetes and sleep problems. Energy drinks are also loaded with sugar. Pediatricians link energy drinks to hyperactivity, anxiety and poor decision-making in teens.

However, there’s also caffeine in food we eat. It’s important to read food labels because ice cream, chocolate, bubble gum, energy bars and some medications also contain caffeine.

“Caffeine can be hidden in unexpected places,” said Benjamin Bacon, MD, a pediatrician at Riley Children’s Health. “Sometimes items marketed or labeled as ‘healthy options’ can actually have relatively high levels of caffeine or sugar, especially in flavored beverages.”

Also keep in mind that “decaffeinated” coffees and teas still contain some of the stimulant. Together with popular beverages, these foods can add to a growing intake of daily caffeine.

How to address caffeine use in kids

A simple first step for parents is to involve their teen in choosing non-caffeinated options to have at home. By normalizing drinking and eating healthier options and engaging the teens in the decision-making process, kids can develop better habits.

Kids will still be exposed to caffeinated drinks and snacks outside of the home. Advertisements, social media and peers will often introduce teens to a variety of sugary and caffeinated drinks. In fact, many schools sell energy drinks in vending machines, even though the National Federation of State High School Associations says student athletes should not drink them.

It’s important for parents to talk to their kids about caffeine: what it is, how it affects the body and the kinds of drinks and foods that have it. A recent poll of parents of teens found that one in three parents haven’t set caffeine limits for their teens. Talk to your kids about caffeine and decide on a healthy daily goal.

One study found that adolescents who consumed less caffeine knew more about

nutrition and had better eating and sleeping habits compared to their high caffeine-intake counterparts. Regardless of age, simply knowing the side effects of caffeine and being aware of individual habits can help to shape them.

If you are still concerned about your child’s caffeine intake, make an appointment with your child’s pediatrician or family medicine physician to talk about how to reduce intake. If your child has developed a dependency on caffeine, it is helpful to have a doctor’s support in reducing intake while addressing any withdrawal symptoms.

Ja’Karr Ashley is a guy on the go. The 12-year-old might be waiting for a heart transplant at Riley Hospital for Children, but you won’t find him in bed very often.

“I walk past his room several times a day, and he is never in there,” laughs Maegan Boehm, Ja’Karr’s transplant coordinator. “He is always out and about talking to somebody, whether it’s another patient or the nurses, or he’s pranking someone.”

He also stays busy with schoolwork, cooking classes, special events and therapy. And of course, video games, movies and LEGOs.

Ja’Karr has been inpatient on Riley’s Heart Center since November, when he suffered a heart arrythmia incident and collapsed during music class at school in Fishers, Indiana.

That’s when transplant cardiologist Dr. John J. Parent urged the boy’s parents to consider readmitting him to Riley, saying he was not comfortable “rolling the dice” with Ja’Karr outside the hospital.

The sixth-grader has been in and out of the hospital since he was a baby after he was diagnosed with hypoplastic right heart syndrome, a rare congenital heart defect where the right side of the heart is underdeveloped.

Surgeries by Dr. Mark Rodefeld and others bought him some time, but Ja’Karr was added to the transplant list in the fall of 2015.

That’s when Boehm got to know him; at that time, he was just a precocious toddler.

“He was one of the first patients I started working with from a pre-transplant listing standpoint,” she said. “We’ve kind of grown up together. He’s such a happy kid with a smile on his face all the time.”

While he waited at home for a donor heart, Ja’Karr was lower on the priority list to be matched, but being inpatient bumps him up to 1A status.

So now, he waits. Along with his mom, dad, siblings and all his friends on 3 West at Riley.

On this latest admission, Ja’Karr has already spent Thanksgiving and Christmas at Riley. He just celebrated his birthday in the hospital last week.

His dad worries that he’ll get more restless the longer he waits.

“For the most part, he is taking it OK being here because he’s so busy, but I don’t think he fully understands how long it might take,” Jerry Ashley said.

He and Ja’Karr’s mom, LaTasha, alternate time at their son’s bedside, doing their best to support him and work with the Riley team to keep him focused on staying as healthy as possible while they wait.

“I support Riley 100 percent,” Ashley said. “At first, I wasn’t coping with the idea of transplant very well because someone has to pass away in order for my son to live, but Dr. Parent has explained it all, and I got my mind wrapped around it.”

His son’s joyful demeanor helps, he said.

He thinks I’m his Batman and he’s my Robin,” Ashley said with a chuckle. “He’s top tier. His sense of humor is like mine.”

While Ashley likes to claim the title of mayor around his son, Ja’Karr might win that race these days.

“Everyone at his school knows him and loves him. I would say here it is kind of the same,” Boehm said, throwing her support behind Ja’Karr for mayor of Riley.

While she and the team at Riley were pleased that Ja’Karr was able to stay home for long stretches during this wait for a donor, the heart arrythmia at school in the fall was a wake-up call.

“His heart is getting worse,” Boehm said. “We need to monitor him here until we can get a new heart for him.”

In the meantime, she and the rest of the team will continue to get their daily dose of joy from Ja’Karr.

“Both mom and dad have been wonderful to work with over the years,” she said. “It’s been an honor to watch him grow and to watch them parent him and grow along with him and allow us to be part of this journey.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

For Kathleen Head, growing up in a household with deaf siblings had a profound impact on her relationship with language in all its forms.

Her first language, in fact, was American Sign Language, before she became fluent in English and Spanish.

The longtime hematology/oncology nurse at Riley Hospital for Children uses all of those languages to communicate with patients and families to ensure they have equitable access to important medical information.

That passion has morphed into multiple roles at Riley, including as a Spanish educator for Spanish-speaking hem/onc patients and families on 5 West and a leadership role on a hospital-wide language access committee that she spearheaded.

“I love the education role, and I love hem/onc and very much love using my Spanish to connect with families who prefer Spanish,” she said. “I love being able to stay partly at the bedside and partly in education.”

Her focus on improving patient experience and safety through equitable language initiatives landed her a role on Riley’s quality and safety team last summer, and recently she was nominated for a national DAISY award recognizing extraordinary nurses in patient safety.

“Kathleen exemplifies the very definition of an extraordinary nurse by the way she prioritizes and improves the safety and well-being of her patients, their family members and her fellow team members,” wrote Anne McCallister, director of quality and safety at Riley, in nominating Head.

“In her role as the Spanish educator for the inpatient cancer center, Kathleen quickly identified the need for additional language resources and advocacy for non-English-speaking families,” she added.

She took the initiative to galvanize support among hospital leadership and across teams to create the Riley Hospital Language Access Committee.

“What began as an effort to improve care and communication on one unit is now a hospital-wide quality initiative focused on improving language equity,” McCallister said. “This has created a cultural shift across the hospital, making Riley safer for all families.”

While Head was not one of the two national winners, she said the nomination validates the work she and a large group of people are doing at Riley to improve the patient and family experience, regardless of the language they prefer.

“I developed the Spanish educator role (in 2022) because that was in my skill set, but it didn’t take long to see that this kind of coordination is necessary for all our families who prefer a language other than English,” Head said. “I realized there was a much greater need across the hospital for language access development.”

The language access committee has evolved into a multidisciplinary, hospital-wide initiative to improve communication as a way to improve care.

Part of the work committee members do is making sure all team members are aware of the language support services available, whether that be in-person interpreters, electronic interpreting via MARTTI or document translating support, key in communicating discharge instructions.

Data collected by McAllister and her team indicate that Head’s efforts have helped reduce patient harm and readmission by improving hospital communication between patients and clinicians, ensuring families receive safer, high-quality discharge instructions in their preferred language.

Echoing McAllister’s comments, Megan Isley, Riley’s chief nursing officer, said Head “epitomizes the very essence of an extraordinary nurse dedicated to patient safety,” not only in her role as a bedside nurse but also as the Spanish educator for the cancer center.

“Kathleen’s unwavering commitment to the safety of her patients, their families and her fellow team members is truly commendable.”

Her “innovative approach and relentless commitment” have resulted in significant improvements to patient care and communication, Isley said.

Head, a mother of two, said that from a young age, she saw and understood how unequal access to language support can lead to different lived experiences.

Bridging the communication gap is key to better outcomes, she believes.

“Life is hard enough for people. I believe in respecting the dignity of all people and doing what you can to help everyone communicate. That is always on my heart.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Lillian and James Manship picked an exciting time to begin pushing their way into the world – in the middle of a snowstorm and well before their due date.

The twins, the first children of Clay and Diana Manship, arrived in the middle of the night at Riley Hospital for Children in Indianapolis, hours after the city was blanketed by nearly a foot of snow Jan. 5-6.

“I had been perfectly fine. I had a great pregnancy,” Diana said from James’ room in the NICU at Riley this week. She and her husband alternate time between James in one room and his sister right next door.

At 25 weeks pregnant, Diana, a Riley NICU nurse herself, wasn’t expecting her babies to arrive so quickly.

“I had no symptoms. I was asleep and woke up around midnight, and my water had broken.”

The couple, who live Downtown, began the treacherous drive to the hospital, at one point following the tracks of a snowplow clearing streets in the darkness.

Normally a 10-minute drive, the trip took close to 30 minutes, Clay said, but they pulled up to the doors of the Riley Maternity Tower at about 1 a.m. Jan. 6. Diana had planned to give birth at IU Health North Hospital but knew they had to go to Riley.

Clay threw the keys to his truck to a valet at the maternity tower entrance and hustled his wife upstairs to labor and delivery.

There, the team was able to pause the delivery for 24 hours, but the twins refused to wait any longer, arriving at 2:12 a.m. and 2:13 a.m. Jan. 7. They were immediately transferred over to the NICU in the adjoining Simon Family Tower at Riley.

“It was quite an experience,” Clay said, thinking about the mild panic they both were feeling at the time. “I stayed as calm as I could, given the situation.”

Because it was so early in Diana’s pregnancy, the couple didn’t have a “to-go” bag packed, so they arrived with just the clothes on their back, he said.

Today, they are counting their blessings, despite the rushed delivery. Both babies are doing well, mostly working on lung development. James has already been extubated and is breathing with oxygen support, while Lillian is not far behind, Diana said.

“Lilly is a minute older, and she’s the one who broke my water, so we tease her a lot,” the new mom said. “She was ready to come out, but James was pretty cozy in there.”

As a NICU nurse, Diana is no stranger to the care of micro-preemies, but it’s wild being on the other side of their care as a mom, she said.

“I can’t silence the alarms like I used to, and I can’t have access to all of the equipment,” she said, “but it’s really comforting to know all of my wonderful co-workers are taking great care of them. We feel very blessed that we’re here and that they are being taken care of by the people I trust.”

For now, they are content to embrace their role as new parents, rejoicing over every milestone their twins achieve.

And theirs is a story they will share with family and friends alike as the babies grow.

“Someone somewhere has to give birth at 2 in the morning, and someone somewhere has to drive through the snow to do it,” Clay said. “You can focus on the bad luck of it or focus on the good luck of having two healthy kids. We choose to focus on the good.”

The babies, who weighed just over 2 pounds each at birth, will likely be in the NICU for at least two months as they continue to grow and develop.

“We have a long road ahead of us, but we look forward to the challenge,” Clay said. “The more the storm, the more the strength.”

The accident happened in a flash. One minute the family was whole and happy, and the next, they were grappling with a traumatic injury and rushing to the nearest hospital.

The screams and shock gave way to tears and tense conversations with a team of doctors.

At the center of their concerns lay then-8-year-old Paul Warner, youngest son of Neal and Kortnee Warner and little brother to Oliver Warner.

Paul and Oliver had been kicking around a soccer ball outside their Irvington home, while Neal and Kortnee worked in the backyard. Kortnee, who thought her sons had gone inside, rounded a corner on a riding mower when the boys came crashing down in front of her.

She immediately shut off the machine but not before Paul’s left hand got caught in the blade. It was pretty clear that he would lose some, if not all, of his fingers. The index finger was barely attached. The mower blade had cut deeply into the boy’s hand, severing bones, nerves, tendons and arteries.

“IT WAS AWFUL”

The emergency medicine physician Paul first saw at an Eastside hospital close to the family’s home was doubtful that the hand could be salvaged, but Paul was rushed by ambulance to Riley Hospital for Children, where a team of specialists went to work.

“It was awful,” Kortnee says today, a year-and-a-half after the accident.

“And it’s a giant public service announcement” for lawnmower safety, she added. “The kids had never come into the yard when we were mowing, but this is definitely something we should have talked about.”

Leave it to soft-hearted Paul to try to relieve his parents’ anguish as he faced multiple surgeries and grueling therapy at Riley Hospital in the summer and fall of 2023, and on into last winter.

Kortnee recalled in a Facebook post how Paul asked her one night in the hospital if she was OK.

“I said yes and asked why,” she wrote. “He said, ‘You were kind of quiet, and I just don’t want you to feel bad that this happened to me because I know I’m going to be OK. There are all kinds of things I can do with one hand, and I might be able to do some things with my other thumb too.’”

That was in the early days when the family and the doctors didn’t know what fingers could be saved on the injured hand.

“I don’t know what I did to deserve this kid, but he’s teaching me new things about resilience every day,” Kortnee said.

BACK IN THE GAME

A lot would transpire over the next several days and months, including multiple reconstruction surgeries by Riley plastic surgeon Dr. Joshua Adkinson and hours of tedious and sometimes painful therapy for Paul.

But today, the 10-year-old is doing all the things his parents thought he might never do again -- with 8½ fingers. That includes playing guitar and video games and even rejoining his soccer team as goalie.

“Eight-and-a-half is my new favorite number,” the precocious Paul says with a smile.

He, his parents and brother sat down in the living room of their home recently to talk about the accident and about their gratitude for the Riley team and for the friends and family who have supported them in ways big and small.

At first glance, the fourth-grader’s left hand looks pretty normal. But look closely and you can see the index finger is missing entirely and the pinkie finger is half its normal size.

Dr. Sunil Tholpady did the initial surgery that first night, removing the index finger and cleaning out the wound. Dr. Adkinson would then come in to reconstruct Paul’s hand over time.

Although Paul lost his first finger at the knuckle, when Dr. Adkinson did the surgery, he cut the bone back farther to create a scoop shape, so the hand looks more natural. Additionally, he was able to graft veins from the boy’s arm to replace the damaged vessels in his hand and reconnect the main blood supply to his remaining fingers.

That was followed by additional surgeries to remove scar tissue.

Doctors told his parents that Paul is young enough that this injury shouldn’t hold him back.

“I draw strength just from watching Paul thrive in whatever he tries to do,” Neal said. “He’s a pretty persistent kid.”

That persistence has paid off, Dr. Adkinson said.

“Most kids with an injury like this are very impaired and don’t really end up using that affected hand so well in the course of normal life,” the surgeon said. “He has done significantly better than most kids his age with this kind of injury.”

SHOWING OFF HIS SKILLS

Dr. Adkinson and some of Paul’s care team saw that firsthand in November when Paul played his guitar for the group during a follow-up appointment.

The surgeon, who also plays guitar, was impressed with Paul’s performance.

“It was one of the more satisfying things I’ve seen in a long time,” he said. “Just to take a kid who had such a devastating hand injury and now he’s at the point he can play guitar, it’s pretty special.”

“Guitar is therapy for his hand and his mind, so I was really happy to see that,” Dr. Adkinson added. “It also shows that he has a lot of grit, that he’s able to push through and resume something he’s really passionate about despite this devastating injury.”

Paul, who is right-handed, had just started playing guitar before the accident. While it’s his left hand that was injured, a guitar requires two hands. As a right-handed player, he would strum with his right hand and play chords with his left. Now, he does the opposite.

“I don’t have enough fingers on my left hand to play like a G chord,” Paul said, so he adapted.

He is able to grip a pick with his thumb and middle finger on the left hand, while reaching the chords at the top of the guitar using all five fingers on his right.

At first, he didn’t think he would pick up a guitar again. He tried a ukelele left-handed, then resumed guitar lessons last January after another surgery to remove scar tissue in the hand.

“I think I’m better left-handed than right-handed,” he said, before settling in on the sofa to play and sing “Imagine,” by John Lennon.

SEWING HAND BACK TOGETHER

Seeing how far he has come makes his parents proud, of course, especially when they consider how bad things looked.

While the damage to the index and pinkie fingers was obvious, the accident had also cut off blood supply to his two middle fingers.

“Initially, we didn’t know if they were going to be able to save these two fingers because they were just getting peripheral blood flow from tiny veins, but the main artery wasn’t connected,” Kortnee said.

“They had to sew nerves back together,” she added. “The nurse said it was like sewing the ends of two pieces of hair together.”

Paul, who seems wise beyond his years, described the experience as “traumatizing” but said music helped calm him in and out of the hospital. The nurses he had on the burn unit were “phenomenal,” his mom said, as were the child life specialists who visited his room.

“We are overwhelmed by the kindness, professionalism and sensitivity of his care at Riley,” added Neal.

Paul’s story is a cautionary tale, of course, but it’s also an example of courage and commitment.

“One of the things we think about with mangled hand injuries is not just whether we can save the hand, but will it be functional? Those are two very different things,” Dr. Adkinson said.

“I was fairly confident we’d be able to save his hand, but what I didn’t know on the front end was that he and his family would be so committed to therapy. That was really the X factor,” the surgeon said.

“I knew if I could give him a good head start in the OR, he would do great. And I think Paul kind of knew what he needed to do to get a good result. He was willing to put in the hard work to get there.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Every day, Tracy Spitzer tracks heartbreaking statistics.

Heartbreaking because every statistic represents an injured child.

Car accidents, lawnmower injuries, gunshot wounds, child abuse and accidental falls are just a few.

Kids with traumatic injuries arrive daily at Riley Hospital for Children, and it is Spitzer’s job to track those patients to provide an overall picture of how they move through the emergency department, the pediatric intensive care unit and other areas within the hospital.

Spitzer, a veteran of IU Health, is Riley’s new trauma program manager, working with Dr. Matthew Landman, trauma medical director, to continuously improve Riley’s trauma response and reporting protocols to maintain the hospital’s Level 1 pediatric trauma center verification. Riley has maintained that distinction since 1993.

Riley’s overall trauma numbers are rising, according to data provided by Spitzer. In 2024, Riley treated 2,165 patients for injuries. That compares to 2,078 in 2023 and 1,855 in 2022. The most common traumas Riley sees are falls (from furniture, windows, playground equipment and stairs), vehicle crashes, children being struck by something other than a vehicle (blow darts or fireworks, for example), ATV/bicycle accidents and sports injuries.

Trauma 1 injuries are the most serious, requiring a rapid response time and 24-hour critical care services. As mentioned above, these injuries can stem from car crashes, blunt-force trauma, burns, gunshots and serious falls. Seasonal traumas might include sledding accidents, lawnmower injuries, bicycle accidents and near-drownings.

Trauma 1 numbers at Riley over the past three years have fallen from 233 in 2022 to 197 in 2024 due to a change in reporting criteria, Spitzer said.

The average age for all traumas seen at Riley in 2024 was 7 1/2, the busiest admission day was Saturday (17.8%), and the majority of patients were male (67.18%).

Spitzer previously worked as a bedside nurse in critical care at IU Health Methodist Hospital for many years, before transitioning to the role of clinical nurse specialist. She moved over to Riley about six years ago as a clinical nurse specialist in the PICU and burn unit.

Spitzer definitely had the critical care skills, but working in the pediatric world was a big change.

“It was a scary transition, but the PICU staff was just amazing,” she said. “I have been so impressed with Riley and trauma services – coming from the adult world. You realize how sick kids really can be and how badly injured they can be.”

While she saw her share of gunshot patients at Methodist, seeing children suffering the same kind of violence is devastating.

“I never anticipated when I came to a pediatric hospital that we would have to worry about that,” she said. “It’s a trauma not only for the patient, but for the family and the community.”

There were 46 pediatric patients treated for gunshots at Riley in 2022, 57 in 2023 and 47 in 2024 (10 in the month of August alone).

Spitzer, who earned her RN degree from Indiana Wesleyan University and her master’s from IU, took on her new role in July and hit the ground running, as she and her team must prepare for the verification process through the American College of Surgeons this year.

“No pressure at all,” she joked during a conversation in the lobby of Simon Family Tower last week.

There is a lot of number crunching in her job, as well as work on policies and procedures, but there are also lots of opportunities to collaborate with other teams in the hospital, to talk with nurses about what’s working and not working, and to follow patients’ progress throughout their stay.

“There is no typical day,” Spitzer said. “That’s the fun part of the job.”

Dr. Landman said Spitzer has fully embraced her new role.

“Tracy has taken her wealth of experience from her time in the trauma program at Methodist Hospital and also as the clinical nurse specialist in the PICU and put it together to elevate the trauma program even in her short time in this new role,” he said.

“She is an invaluable partner in leading the program and will undoubtedly continue to make Riley a leader in the care of injured children.”

Currently, the trauma team is working on multiple initiatives, including video reviews of teamwork during trauma care, new electronic flowsheet documentation and fast-acting blood transfusion protocols.

While Spitzer doesn’t have any direct patient care responsibilities, she tries to respond to serious traumas that come into the ED, if only to watch the team at work and determine if any processes can be improved. She also rounds on the PICU, talking with nurses and others to keep communication lines open.

“I have enjoyed building relationships with trauma services in the rest of the hospital,” she said. “Trauma isn’t just the ED. It’s the peds ICU, it’s 9E acute care, it’s radiology, it’s nutrition and rehab services. Watching it all come together has been amazing.”

Outside the hospital, Spitzer, who has one daughter and three grandkids, enjoys rooting for Ohio State University football and watching auto racing with her partner, Paul. They have a dog (Toby) and two cats (Bob and Mango).

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Someday, little Rapha Born will hear the stories about his birth at Riley Hospital for Children.

Or, more precisely, he’ll hear about the surgery he had before he was even born.

Rapha, now 2 months old, underwent a bilateral chest shunt procedure in utero at about 25 weeks’ gestation. His mom, Tess Born, was seen at the Fetal Center of Riley Children's Health/IU Health by Dr. Hiba Mustafa, director of fetal surgery.

The reason for the surgery was to drain fluid that was accumulating in his chest cavity. Failure to do so could have ended in Rapha suffering a condition similar to congestive heart failure.

Instead, Rapha was born healthy in November, and today he is “doing all the baby things,” his mom said.

“He’s cooing, he gets really excited when his sister comes to help with bottles and diaper changes, he sleeps really well, and he’s eating more than I thought was possible for a tiny man.”

Tess and her husband, Tim, who live in Mishawaka, Indiana, were grateful for the maternal fetal medicine team at Riley that stepped in to help, even though that meant the couple had to travel three hours down to Indianapolis to get the care mother and baby needed.

“My husband and I consider Dr. Mustafa an angel on Earth,” Tess said. “She is absolutely fantastic, as is Ari Duszynski.” (Duszynski is Riley’s fetal care coordinator.)

After repeated scans to track the fluid buildup, Dr. Mustafa explained to the couple the risks of doing nothing compared to the risks associated with fetal surgery and placement of a fetal chest shunt.

Tess’ baby was suffering from a condition called fetal pleural effusion, which occurs in less than 1% of pregnancies.

Fetal pleural effusion can cause damage to the development and function of the heart and lungs. Fluid can cause the heart to shift in the chest and make it difficult to pump blood, leading to fetal heart failure, also called hydrops.

It is most often caused by infection, anemia, fetal genetic conditions, fetal anomalies such as congenital heart disease, and abnormal blood vessel or lymphatic development. Dr. Mustafa suspects the latter caused Rapha’s condition, as there was no genetic finding.

There are three scenarios that make it critical to intervene in a pregnancy and place a shunt or chest tube, Dr. Mustafa said: Fluid on one side is so severe that it is pushing the heart to one side; both sides have so much fluid that it is preventing proper lung growth; or baby is suffering from a condition called hydrops, where fluid is affecting the heart’s function, leading to heart failure in many cases.

In Rapha’s case, both sides were severe, and the lungs were so small doctors worried that if left untreated, it would affect lung development or result in hydrops/heart failure.

Dr. Mustafa delivered the news to the couple calmly and thoroughly, Tess recalled, giving them a day to process the information and decide how they wanted to proceed.

“My husband and I went home, and we were both so emotional, we called her and asked a bunch of questions,” Tess said. “She was very calm, explaining to us what was happening, and we decided to go through with it. She was with us every step of the way, making sure I was well-informed. She’s just incredible. I could not imagine doing this without the help of Dr. Mustafa.”

Tess was awake during the hourlong procedure, while Dr. Mustafa talked her through every step. She was even given the option of watching on monitors but declined.

The shunts in question are small (about 2 inches long), flexible, plastic tubes placed in the baby’s chest during pregnancy. One end of the tube goes into the baby’s chest cavity, and the other end remains in the amniotic fluid in the uterus. The tube helps the fluid move from inside the baby’s chest out to the amniotic fluid.

“We recommended delivery at Riley just because these babies might require surgery after birth, and we have the pediatric surgery expertise here, but baby Rapha did not need surgery post-delivery,” Dr. Mustafa said.

There are risks associated with fetal surgery, primarily pre-term labor, she explained, so timing is critical. But not doing the procedure means there is a high risk for loss of the baby. Tess was induced at 37 weeks at Riley, delivering 5-pound, 14-ounce Rapha vaginally. Today, Rapha weighs 12 pounds, 12 ounces.

“I have two little scars, but if anything, they are just reminders of how awesome the procedure went and how well he’s doing,” Tess said.

Many practitioners consider hydrops an untreatable condition. Dr. Mustafa said, but in some cases, it is treatable, particularly when there is no genetic association and the condition is caused by primary pleural effusion, in which case the team can offer shunt placement, or if caused by anemia, can be treated with an intrauterine transfusion.

“There are things we can do – it does not have to be a lethal diagnosis,” the physician said. “We’ve proved that in so many of these cases.”

As the only fetal medicine center in the state, Riley offers a multidisciplinary spectrum of fetal medicine and surgery, she added.

“There is no patient that gets to us who will be referred outside because we have the full spectrum of services and innovative therapies. We have the means and the teams here to take care of these babies.”

For Tess and Tim, sharing their story is something they are eager to do, Tess said.

“Truly anything we can do to help other families going through something similar is such a joy for us.”

Learn more about this condition and Riley’s treatment options here.

Adeline “Addie” Masten wasn’t expecting a complicated delivery with her first child, but she knew she wanted to be among friends in the Maternity Tower at Riley Hospital for Children when the time came.

That’s because Masten herself is a labor and delivery nurse at Riley, and she knew that if anything were to go wrong, Riley was the place to be.

As it happened, things did go wrong, and the nurse/first-time mom was grateful for her medical team during a frightening labor, delivery and recovery.

Masten wanted to recognize one particular member of that team – labor and delivery nurse Lide Segovia-Tomcho – and was delighted to be on hand when Segovia-Tomcho was honored with a DAISY award last week.

“Lide is an exceptional advocate for her patients,” Masten wrote in her nomination letter. “As a Riley labor and delivery nurse, I have the privilege of working with Lide, (but) on Sept. 7, 2024, she helped take care of me during the emergent delivery of my daughter.”

Segovia-Tomcho, born in Venezuela and educated in Washington, D.C., began her medical career at IU Health Methodist Hospital 10 years ago as an interpreter/doula before earning her nursing degree.

She has a passion for women’s health and moved with the maternity team at Methodist to Riley when the Maternity Tower opened in 2021.

While she has worked with Masten for years on the night shift in labor and delivery at Riley, she was not part of her immediate care team the night her friend came in to deliver her baby girl.

But that changed when it became apparent that something was wrong.

“Prior to my own labor and delivery experience, I would frequently express my appreciation for the way Lide connects with and advocates for her patients,” Masten said. “I have watched her help patients through incredibly difficult situations and often find myself thinking how lucky her patients are to have her as a nurse.”

This time Masten was on the receiving end of that care when her kidneys stopped functioning, and she became confused and incoherent at times.

“Though Lide was not my primary nurse that night, she was brought into my room to help figure out what was going on and how to proceed,” Masten said. “According to my husband, Lide was able to communicate with me and help me decide that proceeding with a C-section was our best option.”

Although her baby, Avery, was born healthy, Masten was moved to intensive care for a short time while her kidneys recovered from the stress on her body. Both mom and daughter are doing well today.

Masten and Avery returned to Riley to surprise Segovia-Tomcho for the DAISY ceremony recently.

“I’m glad to be able to give back to someone who has supported me through everything and would do anything to make sure I’m OK,” Masten said.

Segovia-Tomcho, married and the mother of two children in college, said she is honored to receive the award, especially coming from a fellow nurse whom she admires, but being the center of attention is out of her comfort zone.

“It’s weird to be in the spotlight,” she laughed, attempting to shift the conversation away from her and onto Masten.

“She’s a brilliant person, so strong and so smart,” Segovia-Tomcho said of her colleague. “I know she was super scared … but everybody was working together to take care of her and doing what we do every day.”

One meaningful way they took care of her was by capturing photos in the operating room and later when Masten was still recovering.

“She took photos of my baby and of my husband (Andrew) holding her for the first time. My memory leading up to delivery is limited, and I do not remember the first several hours of my daughter’s life. I am grateful to have those photos to look back on since I was not present in that moment,” Masten said.

“While I often feel sad or guilty for missing out on bonding with my daughter after delivery, I find comfort in knowing that my co-workers were there with her. I am certain that Lide loved on her while I was unable to.”

Masten said Segovia-Tomcho gives the same compassionate care to all of her patients.

“Between her protective nature and courage to speak up for what she feels is right, Lide is a fierce patient advocate. My husband and I will never forget the way she cared for our family.”

Nominate a nurse who exemplifies excellent clinical skills and compassionate care here.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

When Curtis and Shelby McDowell learned that the baby boy they were set to adopt had been born with cleft lip and palate, they decided their match was meant to be.

That’s because Shelby was also born with the condition, undergoing multiple surgeries and appointments at Riley Hospital for Children when she was young.

Now 28, the Illinois mom of four was back in Indianapolis recently with her husband to meet with Riley’s cleft and craniofacial team about treatment for 2-month-old Shiloh.

“We went through a faith-based adoption agency, and they asked what medical conditions we were experienced with,” Shelby said. “We were open to many diagnoses. We believed we would know how to help and be a blessing.”

That was nearly two years ago.

They didn’t find out about Shiloh until Nov. 2, the day he was born in southern Illinois, when the adoption agency contacted them to say the baby boy could be theirs.

“We left it up to the Lord, and he led the way.”

The most common birth defects affecting the face are cleft lip and palate, occurring in about 1 in 600 newborns in the U.S. each year. Cleft lip is a separation of the lip, and cleft palate is an opening in the roof of the mouth. Both require surgery to repair.

While the initial appointment with the Riley team of specialists can be daunting for many parents, the McDowells took it in stride.

“It can be hard to navigate, but because I have been there, a lot of the information is not new, and it’s not scary to me,” Shelby said.

It helps that her parents are on this journey with them and have been able to share photos and stories of their daughter’s time at Riley as a baby until she was about 8.

They had no idea Shelby would be born with cleft lip and palate, but they were quickly referred to Riley, where their daughter underwent several surgeries and follow-up care over the years.

“I remember little things about Riley, and it’s surreal to be back,” Shelby said. “I had a good experience – I can’t recall anything negative about the medical team, and I had both my parents with me,” she recalled.

“When you have surgery and exams and check-ups as a kid, you can have trauma associated with that, and maybe you don’t like hospitals,” she added. “I really don’t have that. I’ve always thought that Riley was super inviting. They are a positive environment for children and a support for families.”

When the McDowells went to meet their son for the first time, Shelby’s parents came to stay with their three older children. Together, they prepared them for the difference in facial features that Shiloh would have but reinforced the message that he is otherwise healthy.

“They are already very attached,” Shelby said.

Currently, Shiloh has a feeding tube to make sure he gets proper nutrition, but he is otherwise doing well back at home. In fact, the family went on a long-planned trip to Disney World over the holidays, and Shiloh did great, his mom said.

In April, Dr. Emma Cordes, director of the Cleft and Craniofacial program at Riley, will do Shiloh’s lip repair. The palate repair likely will be done later in the year.

“I feel like the Lord is leading us to the doctors and nurses who are meant to help him,” Shelby said. “They truly want to help Shiloh have a better future and for him to live as normal of a life as he can. I’m not intimidated by what’s to come.”

Riley Children’s Health offers the state’s largest cleft and craniofacial care team in Indiana. Established in 1933, the program was among the first of its kind in the U.S.

Josiah Carel is a natural in front of the camera. His smile is real and uncomplicated. In fact, if he’s not sleeping, he’s smiling, his mom says.

“He’s a happy kid in general,” said Chrissy Carel, a single mom whose world was spun off its axis when Josiah was diagnosed with an inoperable brain tumor at the age of 7.

The low-grade glioma with a BRAF mutation on his brain stem is slow-growing but stubborn, which makes treatment tricky.

Still, in August of 2023, Josiah rang the bell at Riley Hospital for Children after more than a year of chemotherapy.

For about 10 months, he was back to being a kid again, enjoying sports and school and friends. But last summer, scans showed the tumor was growing again.

Josiah, who will celebrate his 10^th birthday Jan. 22, is six months into a new form of chemo that he takes weekly at home.

“For the first time since he restarted treatment, he said he was scared, and it about broke my heart,” his mom said. “But he keeps a smile on his face, and he continues to go to school.”

Josiah, who is under the care of oncologist Dr. Alex Lion at Riley, is a fourth-grader at Boone Meadow Elementary in Whitestown, Indiana.

Outside of school, he likes to ride his bike and go to football, basketball and soccer games. And he is part of Team IMPACT, which matches children facing serious illness with college sports teams. Josiah was paired with the IU Indianapolis Men’s Soccer team, which took him under their wing, inviting him to practices and for kick-abouts on the pitch.

“He really enjoys being around the guys,” Chrissy Carel said. “I never realized there were so many not-for-profit organizations out there to help. I don’t like to ask for help,” she acknowledged. “But I need to get over that.”

In fact, if she had to give one piece of advice to other families facing life-threatening illnesses, she would tell them: “Don’t be afraid to ask for help.”

Aside from his Riley medical team, which she describes as very caring, the social work team at Riley also has been helpful with resources, including making sure Josiah got to spend a week at Camp Riley, hosted every summer at Bradford Woods in Morgan County, Indiana.

“It helps to bond with people who understand what you’re going through,” Carel said.

“As a parent, it’s scary,” she added. “He’s all I have. You feel helpless. If I could take that pain away and put it on me, I would in a heartbeat.”

For now, she finds her strength in her son, who faces each day with a smile on his face.

Bode Boyer has always been an active kid. The 14-year-old loves baseball and basketball – really all sports – just like his dad.

But his time on the baseball diamond and the basketball court came to a screeching halt after a bout with Covid in August led to a sinus infection, which then traveled into his right eye (swelling it shut) and eventually seeping into his skull.

A scary situation for sure, but the Angola, Indiana, teen and his parents, Brian and Emily Boyer, are seeing a little more clearly today, following Bode’s emergency treatment and continued follow-up at Riley Hospital for Children.

Bode, who was diagnosed with Crohn’s disease when he was just 5 years old, is used to doctor visits and medicine, but needle sticks and surgery and spending several days in the hospital were way beyond his comfort level.

He initially had surgery at a hospital closer to his northern Indiana home to clear up the sinus infection, but it eventually worsened, likely due to medication he takes for Crohn’s, which lowers his immune response.

“He kept getting worse and worse,” Emily Boyer said. “He had terrible headaches, his eye was swollen shut, he was miserable.”

Bode was taken to the emergency department at Riley in November and went in for surgery the next morning to drain the abscess around his eye.

Neurosurgeon Dr. Jignesh Tailor is among the physicians on his care team. Initially, it was his job to consult with infectious disease ophthalmology, and ear, nose and throat teams to ensure the infection was controlled to protect the brain.

Bode was suffering from osteomyelitis, which occurs when bacteria or other micro-organisms enter the bone and multiply, causing inflammation and damage.

“The neurosurgery team was involved because the infection involved his skull as well,” Dr. Tailor said, adding that it was unusual for the infection to encroach into the space around the brain.

“That’s a concerning sign,” he said. “When we saw that, we knew the first thing was to get rid of the source of the infection.”

The surgery to drain the infection around the eye helped, as have the antibiotics Bode has been on since the surgery, but it’s unclear if it will be enough to clear the infection from the bone, Dr. Tailor said.

“If we can’t treat the infection in the bone, which is quite hard to do with medicine alone,” he said, “we have to essentially cut out that piece of bone and then place an implant to replace the missing piece.”

Miraculously, Bode was able to open his eye within a couple of days of the eye surgery and was discharged from Riley after six days.

While there, he bonded with nurse Angie Parsley on the ninth floor over baseball and all things sports.

“He was one of the sweetest patients I’ve ever had,” Parsley said. At the same time, she said, he’s a typical teenage boy, right down to the attitude.

“He does have bad days, especially when it comes to needles or an IV,” his mom said. “He has a huge phobia, but the nurses made him feel comfortable anytime they had to poke him.”

Parsley remembers.

“He definitely would give you sass. And when he felt better, he would joke around, so we mixed well together.”

When he left the hospital, he presented Parsley with flowers.

“They were seriously some of the prettiest flowers I’ve ever gotten from anyone,” she said.

Bode was back at Riley in mid-December for follow-up appointments with infectious disease and neuro. His eye has healed, and his vision has been unaffected, his mom said.

The infection has not gotten worse, but it hasn’t gotten better either, she said. After another 30 days of antibiotics, he will be re-evaluated.

“He has honestly been such a fighter and just kind of deals with the hand he has been dealt. His friends have kept him busy by just coming over and playing video games,” she said.

After sitting out the first semester of school, he has returned on a modified schedule this month, and while he can’t play basketball or baseball yet, he has been able to spend time with both teams.

Meanwhile, Dr. Tailor said his team at Riley will continue to follow Bode, guided by the infectious disease team and focused on protecting the teen’s brain.

“At some point, we’ll have to determine if more treatment is necessary,” he said, including surgery.

“But on the whole, I think he has done well. His outlook is good as long as we’re able to get rid of all the infected tissue.”

Bode’s mom is grateful for his Riley team and the community that has supported them at home, saying it is a precious gift that they don’t take for granted.

“We really can’t ask for a better team working with him. Riley saved his life, and seeing how much progress he has made since September is a huge blessing.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

• 100% 90-day pediatric patient survival (benchmark: 96.1%)
• 100% one-year pediatric patient survival (benchmark: 93.1%)
• 100% three-year pediatric patient survival (benchmark: 85.1%)

In addition, Riley Children’s has the eighth-lowest hazard ratio for pediatric heart transplant (0.68) in the country. These stellar outcomes are attributed to a variety of distinguishing factors, according to pediatric cardiologist John J. Parent, MD, MSCR, medical director of pediatric heart transplant at Riley Children’s. Dr. Parent, who shares leadership of the program with Riley cardiovascular surgeon Mark W. Turrentine, MD, answers questions about the hospital’s record in pediatric heart transplant.

Q: How does Riley’s surgical expertise in pediatric heart transplant impact patient outcomes?

Dr. Parent: Our experienced cardiothoracic surgeons are highly skilled technically, particularly when transplanting to patients with congenital heart disease. In these cases, the reconstruction is much more extensive, requiring our surgeons to perform at the highest level. This is especially true for patients with Fontan completions. In effectively managing bleeding, our surgeons are able to reduce ischemic time—a factor that’s critical to success.

Q: What’s significant about Riley’s intraoperative methods for procuring and transplanting donor hearts?

Dr. Parent: To optimize the preservation process, Riley Children’s intraoperative surgical team always includes both a procuring surgeon and an implanting surgeon. Because our congenital heart surgeons are involved in every case, they know how much donor vessel they need to bring back to effectively complete the necessary reconstruction. This significantly decreases post-transplant complications. Additionally, our outcomes for patients who’ve had Fontan completions are above average, and that’s largely attributable to how we procure the hearts and how our surgeons implant them.

Q: How does Riley Children’s help ensure heart transplant patients thrive following surgery?

Dr. Parent: We have a team of three very experienced transplant coordinators who provide 24/7 support to heart transplant patients and their families. Following transplant, the coordinators check in regularly with their patients to help identify and address any signs of rejection, infection or issues with medication adherence. We maintain a low patient-to-coordinator ratio with each coordinator assigned to 25 to 30 patients to ensure more personalized care. Patients stay with the same transplant cardiologist and coordinator who see them throughout their time in our program. Our team’s commitment to post-transplant surveillance and continuity of care are vital for our patients to do well long term and contribute to our outcomes.

Q: How is the HeartMate 3 making a difference for Fontan patients?

Dr. Parent: We are one of the few centers nationally that has expanded the use of the HeartMate 3 in our Fontan population. All our patients who’ve received the implant have survived at least one year. While it wasn’t initially known how Fontan patients would fare on the HeartMate 3, we’ve had good success getting patients with end-stage failing Fontan rehabbed and ready for transplant.

Riley Children’s is home to one of the few Pediatric Heart Failure/Transplant Programs in the Midwest–and the only program in Indiana. In addition to skilled, experienced pediatric heart surgeons and cardiologists, Riley Children’s offers a proven home monitoring program for single ventricle patients and patients on VAD.

A novel multidisciplinary Pediatric Kidney Transplant Transition Program

Virtual start initiative that quadrupled the rate of inpatient CRRT

With these among its accomplishments, the pediatric nephrology program at Riley Children’s Health is making a life-changing difference for children and young adults with complex kidney disease. Just eight years ago, the program consisted of three full-time and two part-time nephrologists whose sole focus was high-volume clinical care. Today, the division’s 10 nephrologists are setting a standard for excellence as one of the nation’s leading pediatric nephrology programs with patient outcomes among the nation’s best.

“We’ve been very intentional in building a team with a breadth of experience and interests,” said David Hains, MD, pediatric nephrology division chief at Riley Children’s. “Allowing our physicians to ‘lead in their own lane,’ so to speak, has changed the complexion of our clinical care model in every aspect and with great results.”

Using standardized care guidelines and automated alerts in the EMR, the neonatal AKI surveillance program at Riley Children’s has improved recognition of acute kidney injury in the NICU from 17% to 100%. One of the few initiatives of its kind in the nation, the program follows patients from inpatient care in the NICU through longitudinal follow-up in the Neonatal Kidney Health Program.

In a novel approach to transitional care, Riley Nephrology launched the Pediatric Kidney Transplant Transition Program for adolescents and young adults with kidney transplants. Facilitated by pediatric nephrologist Corina Nailescu, MD, and specialists from adolescent medicine and psychology, the program seeks to reverse the high graft losses common in this age group after transfer to adult care.

“This multidisciplinary program focuses not only on the medicine, but also on the transition to independence and supporting patients in undertaking the responsibilities of their care as an adult kidney patient,” said Dr. Hains. “Fast forward five or 10 years, and I think this program will be widely emulated nationwide.”

The transplant transition program, launched just three years ago, is currently following 42 adolescent and young adult patients. Overall, the post-kidney transplant population at Riley Children’s has increased from 88 in 2019 to 141 in 2024.

On the inpatient front, next-level enhancements in inpatient continuous renal replacement therapy (CRRT) are contributing to improved acute kidney care in the ICU. Telemedicine initiation of CRRT, implemented during the COVID-19 pandemic, has made it easier to get renal replacement up and running quickly.

“With virtual starts we can launch CRRT in an hour or 90 minutes, if we need to, and we’ve seen our volumes go way up,” said Dr. Hains. “We’ve published on the safety of virtual starts, which have really been a game changer for our patients with acute kidney disease.”

Since 2018, CRRT days at Riley Children’s have jumped from about 300 to well over 1,200.

“We’ve been deliberate in assembling a team that’s excellent not only on paper but professionals who really care about our patients and one another and want to do more whether through quality improvement, research or education,” said Dr. Hains. “It’s all about giving our patients a better chance of having a somewhat normal childhood despite chronic kidney disease—it’s the reason we come to work every day.”

Learn more about the nephrology program at Riley Children’s Health.

As Riley Hospital’s centennial year comes to a close, this post and this picture are a perfect capstone to the 100 years of remembering and celebrating Indiana’s first children’s hospital.

All that was said on the back of the faded gray tone photograph was “Flag raising ceremonies Sunday afternoon December 6, 1925. Flag presented by Arab Patrol Murat Temple.” The Indianapolis Murat Temple’s Arab Patrol was an elite marching unit. The Indianapolis Murat Temple, built in 1910, is still a part of the national network of Shriners International. But here, the Arab Patrol stood together, in front of Riley Hospital for Children, with no public fanfare, honoring James Whitcomb Riley Hospital for Children with the quiet act of raising a flag to a new chapter in Indiana’s care for children.

The simple act by the Indianapolis Murat Temple’s Arab Patrol of raising the American flag was a fitting tribute to the hope that this new children’s hospital represented then and still represents now. Most of the founders of the James Whitcomb Riley Hospital for Children were veterans of WWI, one of the Spanish-American War. Others had used their leadership skills to help support the war effort. WWI, the “war to end all wars,” was still a fragile and temporary hope just seven years after the Armistice was signed in November 1918. In the quiet of that December afternoon in 1925, with only the sound of our country’s flag being raised, this one simple forgotten act of symbolic hope for the hospital’s future still stands today to remind us why Riley Hospital for Children opened in 1924, how it has lasted for 100 years and now is moving into its second century of caring for children.

--Compiled by the Riley Hospital Historic Preservation Committee

When she was just 6 years old, Olivia Gil waged her first war against cancer. She spent two years in treatment for acute lymphoid leukemia (ALL) before getting back to the business of being a little girl.

Now 18, Olivia graduated from high school last spring, got her learner’s permit and had just been accepted into college when her life was turned upside down again.

She started experiencing light-headedness, shortness of breath and unusual knots on her legs last summer. The first hospital she went to referred her to a dermatologist, but her mom, Jillian Castillo, couldn’t shake the feeling that more was going on.

A couple trips to the emergency room followed, then Castillo and her daughter asked to be sent to Riley Hospital for Children, where Olivia had been treated as a little girl.

This time, Olivia was diagnosed with MPAL (mixed-phenotype acute leukemia), a rare combination of myeloid and lymphoid cancers that can be difficult to treat and accounts for just 2% to 5% of acute leukemia cases.

Walking back into the hospital where her daughter first battled cancer was hard, but Castillo wouldn’t want to be anywhere else.

“We love Riley,” she said.

And being reunited with oncologist Dr. Terry Vik was a blessing.

Dr. Vik, pictured here with a young Olivia and her brother Kevin, saw the Southside Indianapolis family through treatment more than a decade ago, and he was back at their side for this diagnosis.

“That’s why we decided to come back to Riley,” Castillo said. “He’s the best!”

Olivia went through two intense months of chemotherapy and multiple days of radiation, before undergoing a stem cell transplant to give her the best shot at beating the cancer.

With Dr. Jodi Skiles, director of pediatric stem cell transplant, by their side, Olivia received stem cells donated by her 17-year-old brother, Kevin, on Nov. 5.

“He had a lot of questions,” Castillo said, “but of course he was going to do it because it was his sister. He was super brave.”

He was also a little scared, naturally, as was Castillo, but the transplant went well. Kevin was home within a day, while Olivia remained at Riley for about five weeks as she recovered.

The siblings, who also have a younger brother, are very close, their mom said. In fact, she recreated a photo recently of a younger Olivia and Kevin, taken during Olivia’s first leukemia diagnosis. Both times, Kevin is walking with Olivia and helping her with her IV pole.

Olivia, who was discharged from Riley last week, spent Thanksgiving in the hospital – unable to eat – so she is looking forward to being home for Christmas, where she and the family expect to have a quiet day, playing games and enjoying good food, Castillo said.

Asked how she has dealt with this latest challenge in her health, Olivia said she doesn’t remember much from her first diagnosis, but she has felt connected to her care team at Riley and does what they tell her to do, including taking her medicine.

So far, test results have indicated that her brother’s healthy cells are growing in her, but the family is still awaiting results from a third test.

While they wait, they will enjoy being home together, taking one day at a time.

“Olivia is super strong. She always has been,” Castillo said. “She’s doing great.”

Photos submitted and by Maureen Gilmer, mgilmer1@iuhealth.org

When Abi Kidwell was deciding on a career path as a young college student at Indiana University Bloomington, she had crossed nursing off her list.

Not because she wasn’t interested in the profession or capable, but because she came from a long line of nurses and simply wanted to do something different in healthcare.

It’s a good thing though that after first earning a bachelor’s degree in community health, she chose to go back to school to get her nursing degree after questioning how effective she could be teaching health education in Indiana.

“I believe people when they say nursing is a calling,” said Kidwell, a nurse in the maternity tower at Riley Hospital for Children. “I knew I was passionate about the right to healthcare.”

Talking with a neighbor who was a midwife about the state of maternal healthcare in the United States fueled a deeper passion in her to become a labor and delivery nurse. She worked in labor and delivery for two years at IU Health Bloomington Hospital before transferring to Riley earlier this year.

“I wanted to come to Riley to learn more about high-risk care,” said Kidwell, who hails from the tiny town of Hope, Indiana. “It will help prepare me for the day I intend to go back to school to become a midwife.”

Since coming to Riley, Kidwell has been involved in many high-risk deliveries and recently was awarded a DAISY for her care and compassion when a patient’s baby was stillborn.

“The bereavement world can be very heavy and emotionally taxing on nurses,” she acknowledged, “but to know that those moments I spend working so hard for these families truly makes an impact feels good.”

For Rebecca Gonzalez, Kidwell’s care definitely made an impact, which is why she nominated her for the DAISY award.

“The day after I had my daughter was the hardest day of my life,” said Gonzalez, who agreed to share her story publicly. “Nora was stillborn, and a piece of me died with her.”

Gonzalez found out earlier in her pregnancy that her baby girl had Potter syndrome, a severe birth defect that infants rarely survive.

Choosing to carry her for as long as possible, Gonzalez delivered Nora at 34 weeks at Riley.

“She passed during labor, but I was able to keep her with me in a CuddleCot, and we took lots of pictures,” said the first-time mom, who was supported by her mother and sister during and after delivery.

Kidwell’s quiet support, along with the mementoes she created, also brought comfort when the grieving mom needed it most.

“She listened to me, she was there for me emotionally, and she helped me make all these memories with Nora. I am profoundly grateful for Abi and for all the nurses who made a terrible experience just a little easier.”

For Kidwell, ushering her patient through the shock of loss and the waves of grief that follow is part of her calling to be a nurse.

“It was so important to let her process that in the way she needed,” Kidwell said.

“She made me comfortable in my most vulnerable moments,” Gonzalez said. “I will never forget the kindness and compassion she showed me and my family.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Rachel Ray says she’s not an easy person to surprise. Yet even she was astonished when about three dozen firefighters from her husband’s firehouse marched in to join the huge crowd already gathered for her son Benny’s bell-ringing ceremony Thursday.

The hugs, the tears, the gratitude. All of it was on full display in the oncology outpatient clinic at Riley Hospital for Children.

Benny, 17, was celebrating the end of 2½ years of treatment for B-cell leukemia, a journey marked by suffering, for sure, but also great joy and love.

“Welcome to the biggest bell-ringing yet,” said an enthusiastic Dr. Amanda Saraf, the Riley hematologist-oncologist who has walked this road with the Ray family since the summer of 2022 when Benny began experiencing extreme fatigue, muscle soreness and swollen lymph nodes.

“Praise God they sent us to Riley,” Rachel said.

“It is never easy to get a leukemia diagnosis,” Dr. Saraf said to the teen and the crowd of 75 or more surrounding him, “but you’ve been so resilient and so brave through all of this. It’s really been a joy to care for you.”

As nurses, clinic team members, friends and family wiped away tears, Benny, a junior at Bethesda Christian School in Brownsburg, rang the bell signifying the last of 860 days of treatment, followed by these words:

“Ring this bell three times well, its toll to clearly say, my treatment’s done, this course is run, and I am on my way.”

The crowd erupted in cheers and applause, as more bells rang out in the hallway.

Benny, a baseball player and drummer, is on his way for sure, hoping one day to join his father, Mike, on the Plainfield Fire Department, especially after seeing the parade of firefighters who surprised the family, many coming in on their day off to celebrate with him and his parents.

“It’s important for us to be here to show our support of Benny and the Ray family, said Plainfield firefighter Tom Hostetler, who works alongside Mike Ray, a 17-year veteran of the Plainfield department.

The surprise guests even brought along a fire truck, the perfect backdrop for photos as snow began to fall Thursday afternoon. At one point, Benny climbed to the top of the truck and struck a victory pose.

“I’m happy that this two-and-a-half-year journey is finally done,” he said. “I have dreamed about ringing the bell and finally being done.”

And the support he’s received has been beyond amazing, he said. That includes his Riley team, who helped inspire him to think about a life of service.

“Saving lives is pretty cool,” he said.

As he talked about his dream of helping others, his dad forced back tears.

“I’m extremely proud of Ben and the way he’s handled this whole thing,” said Mike, recalling the times he as a dad was brought to his knees, crying out to God for answers.

“God showed us reason after reason why he’s put us through this,” he said. “We’ve seen him put people in our lives and he gave us the courage to move forward without feeling defeated, knowing we’re going to get through this together.”

Benny’s mom also shed many tears, but it was her son, the oldest of the couple’s three boys, who comforted her, telling her he would be OK.

“He’s the strongest kid you’ll ever meet,” Rachel said. “Our faith is what really carried us through. To watch your son go through near death, no mother should ever have to do that, but seeing him grow like this ...”

After 2½ years, she and her husband chose Thursday as the day to remove their #BenBrave bracelets, featuring a verse from the Bible: “The Lord will fight for you …”

She is grateful for the Riley team that wrapped its arms around her family.

“I want to say how hard everyone worked for Benny. I will always remember one moment when they had just taken him back for bloodwork and another bone marrow biopsy. I can’t even tell you what I was feeling. One of the nurses just grabbed my hand and said, ‘Let’s walk.’ And we just walked the hallways. Anytime we went in there, it was like a warm hug,” she said.

“They always encouraged Benny to keep fighting, and he’s going to carry that lesson with him until he’s an old man.”

Seeing her patient surrounded by so many people who love him was a privilege for Dr. Saraf, who said she was amazed, yet not truly surprised.

“Benny and his family simply radiate joy and positivity,” she said. “They celebrated each milestone through his cancer journey, from a good platelet count during a clinic visit to the news that he was in remission. The community and support system that showed up today to celebrate his resilience and bravery are a reflection of that.”

Even as they celebrated, the Ray family wanted to remind other patients in clinic that they hold them in their hearts. They passed out gift cards and exchanged fist bumps and quiet well wishes with others still in treatment.

Witnessing those moments “was nothing short of beautiful,” Dr. Saraf said. “Afterward, several joined to watch him ring the bell and celebrate alongside him.”

“I don’t know how people go through this without this kind of support,” Mike said, as he hugged firefighter after firefighter, friend after friend. “But for the others who are still going through this, I pray there is a light at the end of the tunnel. Everybody should be able to ring this bell, and if not, let light shine through you, no matter what.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Modern medicine and miracles shared space Saturday in the NCAA Hall of Champions, where Riley Children’s Health heart transplant recipients gathered to celebrate the holidays and the gift of life.

The Christmas party, which got its start 30-some years ago, thanks to the efforts of two mothers whose children received hero hearts in the early 1990s, is a day of joy and connection, a time for kids and young adults to learn from each other as their parents also find support.

Paulina Nieto, 25, has undergone two heart transplants, the first one in 2001 and the second in 2015. She recently earned a master’s degree and works as a licensed social worker, and she had a message for the 12- to 18-year-olds she was speaking to in a break-out session Saturday.

“I’ve been able to accomplish so many things I didn’t think I would,” she told the group. “You are more than capable of doing anything you put your mind to. Be proud of yourselves.”

Later, she acknowledged that her goal in talking with the teens was to have a genuine conversation, to let them know that they’ve been given a gift and it’s up to them to live their best life.

“When I look at them, I’m reminded of myself at that age,” Nieto said. “I know I had so many questions, and it can be intimidating.”

But speaking with them, she said, was “inspiring.”

Transplant cardiologist Dr. Robert Darragh, who was joined at the party by cardiologist Dr. John Parent and cardiovascular surgeon Dr. Jeremy Herrmann, has been involved in the celebration since its early days and enjoys seeing his patients grow and thrive.

“This is the fun part,” he said, as he posed for pictures with transplant coordinator Debbie Murphy and longtime patients Kobe Brannan and Leighton Akins, both two-time heart transplant recipients.

“This is where these kids make connections; it’s part of their support network,” he said. “There’s a lot they can learn from each other.”

The annual party has been hosted by the NCAA for 20 years.

“We feel very privileged and blessed that they continue to support this partnership,” Murphy said.

Riley echocardiogram technician Nancy Kehlenbrink couldn’t have been more excited to be back with all of her Riley “kids.” After a lengthy medical leave, she returned to work in October, but coming to the holiday party was a gift in itself.

“I couldn’t wait to get here,” she said, stopping for photos with Ava Graham and Edward Sandefur, who received transplants last year. “This is my life.”

No Christmas party is complete without Santa Claus, of course, and several families made sure to get a photo with him. Among them: a young Caleon McCauley, whose aunt, Carissa Bentley, received her transplant 28 years ago; and the Kinnaird family – 13-year-old Caleb was transplanted 11 years ago and is doing amazing, his mom said.

“This party is really special to us,” Katie Kinnaird said. “It’s like a mile marker, another year and he’s still healthy.”

Samyrah Gray, 16, was transplanted three years ago, but this was her first transplant party.

“I feel good,” she said, while waiting for lunch with siblings Saniyah and Surriyah and her mom, London Gray.

Saturday’s party included games, crafts, interactive exhibits, lunch, and perhaps the best thing – time and space to be with others who bear the same scars and understand the transplant journey better than anyone.

“It’s really nice to see a room full of people who have something in common and something as big as a heart transplant,” said coordinator Maegan Boehm. “Hopefully, they walk away having met someone new and having had fun.”

In the beginning, there were just two or three families who came together for a special Christmas party, first held in a mobile home.

It was a selective list because those attending were connected by a common thread – pediatric heart transplant.

Joan and Creager Smith remember feeling frightened and alone in the early days after their daughter Leah received her first heart transplant as a newborn 33 years ago at Riley Hospital for Children.

Pediatric heart transplants were a very big deal back then. Of course, they still are, but there are more of them today, and social media offers a greater chance for connection among parents and patients.

“We felt so alone with this really big, scary, medical thing happening,” Joan said. “We wanted to meet the few other families who were already going through this to seek support and advice.”

Among the families they met early on were Paul and Collette Leichtnam and their son, McKenzie, born in 1990.

The Leichtnams attended that first Christmas party – memories are fuzzy whether it occurred in 1991 or 1992. From there, it moved to a church, then a restaurant, another church and a couple other spots before it landed at its current location – the NCAA Hall of Champions in Downtown Indianapolis, where it has been held for the past two-plus decades. This year’s party is Saturday, Dec. 7.

For most all of those years, Riley transplant cardiologist Dr. Robert Darragh and his wife, Annie, have been involved, first opening their church to the gathering and then moving with the party down to the NCAA, which volunteered to sponsor the event after seeing the impact it had.

“It started out so small and just grew and grew,” Collette said, just as the success of Riley’s transplant program would grow.

But no matter the numbers, the goal was the same.

“We just wanted to keep in contact with the families, checking in on each other and making sure these kids knew each other,” Collette said. “It was very comforting.”

In those early years, there were homemade stockings for every child, toys, games and treats. But the true gift was the sense of community, both Collette and Joan said.

“The support group and networking was what we wanted the most,” Joan said.

“Our goal was to bring those families together so they could see that they’re not alone. You have to understand how overwhelming it was to be told your child needs a heart transplant – especially back then – and to go through that process and to raise that child. We needed to be with other people who’ve experienced this.”

And the children needed to know that there were others like them as well.

“The impact we had on the families wasn’t about the gifts,” Joan added. “It was about bringing those kids together. Many of those children created lifelong friendships with each other. For those kids to grow up and talk to another child who was going through the same thing was invaluable.”

Leah Smith, 33, remembers that feeling well. The two-time transplant recipient (both performed by Dr. John Brown) said as a little kid, it was difficult to understand the concept of another person’s heart beating inside her. Her parents told her she had a guardian angel – her donor – who gave his heart to her.

The parties and other get-togethers that their Heart to Heart support group planned gave her a chance to see others who’d had the same experience she had, who bore the same scars.

“It was good knowing I wasn’t alone in what I was going through.”

McKenzie Leichtnam was like a brother to her, while she and Jared Robinson connected over music, becoming close friends.

“The party was how we stayed connected in an age before social media,” she said.

She remembers playing with all of the kids and seeing Santa, played by an adult heart transplant recipient, Wylie Embrey.

“There were a few Santas over the years, but our signature Santa was Wiley,” Leah’s mom said. “He was a kid at heart. He and his wife were a big help at the parties.”

Both McKenzie and Jared have since passed away, leaving an emptiness in the hearts of their family and friends. But Leah, who remained active in the annual Christmas party up until 2015 and spoke to school groups over the years, channels her grief into helping others through a Fort Wayne transplant support group she runs.

She was thrilled to reunite with several of her care team at the last Christmas party she attended several years ago, including Dr. Brown and retired cardiologist Dr. Randy Caldwell.

“The party is such an important way for families to connect outside the hospital, not only with each other but with the staff,” she said.

Her mom remembers how involved the staff at Riley were.

“They were just fantastic. The party brought the transplant staff to these families on a different level than they experienced at the hospital,” Joan said.

“I know it’s a cliché that Riley is your family, but it is so true,” she added. “Riley became our family, the transplant team became our family, and they proved that by being so involved in our Heart to Heart group, on top of the Christmas party.”

McKenzie’s sister, Kelsey, remembers as a child and a teen how important it was for her brother to feel “normal” around others who were on the same transplant journey.

“He started to bring his friends to the party, and that opened him up to be able to talk about what he’d been through,” she said.

Known as the “life of the party” wherever he went, he was “an all-around cool kid,” friends and family shared.

McKenzie, who was transplanted at 13 days old at Riley, passed away in his sleep 13 years ago at the age of 20. Kelsey believed in the cause of organ donation so strongly that she went to work for Indiana Donor Network.

Debbie Murphy, who became very close to the family as transplant coordinator, has a soft spot in her heart for McKenzie and all the young patients she has helped over decades in her role.

“He was just a delightful little boy and young man,” she said in an earlier interview. “Just a sweet soul.”

Kelsey returned to the Christmas party by herself the year that her brother died.

“It felt very cathartic to go and to be welcomed by the families because we had that bond,” she said. “There’s something special about a group of people in a room having that instant peace, knowing you’ve all been in the same boat.”

While no longer involved in the annual party, both the Smiths and the Leichtnams are pleased that what they started more than three decades ago is still bringing heart transplant patients together.

“So many people made the parties successful. Debbie Murphy and the other coordinators, the transplant doctors and nurses, and the social workers at Riley all played a part,” Joan said.

“And without realizing it, we were building traditions. The Christmas stockings became part of the party. Every recipient had a stocking that we hung with their name on it. Over the years, many of the kids would go right to the stockings. Unfortunately, we lost kids during the years as well. To help with that process, we did not remove their stocking. We added an angel by their name.”

Paul and Collette reconnected recently by chance with a couple of people who were among their early supporters. One was a nurse and the other a clown.

“All those years ago, I hired clowns, magicians, balloon makers and face painters,” Collette recalled. “This year at our neighborhood garage sale, this lady came up who was shopping for her neighbor kids, and I just recognized her voice, but not her face.”

Then it hit her.

“Is your name Bubbles?”

Sure enough, the woman used to perform as Bubbles the Clown at the heart party.

“I didn’t recognize her without her clown makeup,” Collette said with a chuckle.

She told her the same thing she has said to everyone involved in hosting the annual party: “Thank you for bringing joy to those kids.”

What is it about social media that is detrimental to our children’s health, as well as our own?

Firstly, social media offers a never-ending collection of people with whom we can compare ourselves, says Dr. Melissa Hord, PhD, a child and adolescent psychologist at Riley Children’s Health. The human brain is programmed to make comparisons about its surroundings to stay alive, but social media now allows us to compare ourselves to so many other people that it can trigger anxiety and body image issues.

Social media also offers quick, easy and passive form of entertainment, which can negatively affect the developing child brain. This is especially true when scrolling a social media app replaces a more productive and brain-friendly activity, like playing with Legos or drawing.

“Anything with a screen and lights is very attractive to kids. They get really drawn into it because it’s meant to do be enticing. Unfortunately, the kids most attracted to social media are the ones who get hurt the most by it,” Dr. Hord said. “Kids with ADHD, anxiety, depression or behavior problems see those issues worsen through social media use. Kids with ADHD are drawn to it because their brains are already moving so fast, it’s hard for them to sit and read or sit and do something that’s a better brain exercise. Those activities don’t draw their attention as much as social media.”

As they grow, children develop social and emotional abilities. They use these skills to create and keep meaningful relationships and express and manage their emotions. Kids learn these social-emotional skills by playing and socializing with others. When kids are spending this important time on social media apps instead of interacting with their peers, they’re not developing these important life skills.

The effects of social media on the brain

When we experience something pleasurable, our brain releases a chemical called dopamine that makes our bodies want to continue that action. This is why some of us keep eating chocolate or listening to our favorite music. On social media, we may get a dopamine release from watching a funny cat video or reading a joke meme. Our brains want to continue this dopamine feedback loop, which can lead to mindless scrolling on Instagram or Facebook.

This is particularly challenging for children. By age 10, kids’ brains begin to seek social rewards, acceptance and approval among their social circles, according to the American Psychological Association. A compliment or “like” on social media can begin the reward system, and children are uniquely vulnerable to it. The compliments or criticism they receive online are also more public and permanent than those delivered in person, which can cause lasting feelings of depression and anxiety.

How to limit negative effects of social media

There are several strategies parents can implement to reduce the negative effects of social media and encourage healthy screen time habits with your kids.

Limit screen time

In general, it’s important to limit children’s screen time for mental health and brain development. While the American Academy of Pediatrics suggests specific screen time limits for very young children, there’s more to consider when deciding limits for school-age and teenage kids. A good starting point is a maximum of two hours a day, including school-time screen use. Talk with your family to decide a good limit for you.

Consider whether your kids are ready for social media

While prohibiting your child from visiting social media sites may create feelings of “FOMO” (fear of missing out), experts suggest waiting until a child’s brain is more developed before allowing them to join social media. Every child is different, but this might occur after the age of 13. As you think about whether your child is ready, consider:

• Your child’s maturity level
• How much they feel influenced by others
• How open they are with you about day-to-day interactions
• If they have demonstrated responsibility
• Their willingness to allow you to check in on what they are doing

Curate a healthy feed

If you allow your children to access social media platforms, talk with them about what they’re watching and whom they’re following. By creating a collection of positive, age-appropriate and healthy influences, you can help your child avoid some of the more negative and critical aspects of social media sites. It’s also important for kids to understand that social media algorithms can lead them down a path toward inappropriate content.

“So many kids I work with will end up on an inappropriate website through YouTube because it’s not controlled,” Dr. Hord said. “It’s hard to make sure your kids aren’t looking at things they shouldn’t’ be on there, and a lot of kids end up learning things parents wish they hadn’t.”

To head this off, be aware of what your children are watching and consuming online.

Ensure your child is getting enough sleep

When children stay up late at night, scrolling social media, the lack of sleep impacts their ability to pay attention in class or feel well throughout the day. Dr. Hord frequently sees children who are not getting enough rest, which can worsen feelings of anxiety and depression. Parents can avoid this by creating rules about stopping device use at a certain time every night to eliminate the quick-fix entertainment of scrolling.

Focus on enjoyable activities and hobbies

Make sure your child has non-screen hobbies or activities that bring joy into their lives. While social media can offer unique opportunities to meet and connect with others or learn something new, the interactions are not as fulfilling as real-world ones, especially for the growing brain. Do some self-reflection (for yourself and with your kids) to identify what makes you feel happy and engaged in life, whether it’s sports, crafts or enjoying the outdoors, and be sure to prioritize to those activities.

Model good behavior as parents

Kids often tell Dr. Hord that their parents are on their phones all the time, and it’s a habit that children want to emulate. By setting limits for yourself and following house rules about screen time and social media use, you can help your child navigate healthy social media use.

“Our kids are going to model after us. Model for them being engaged with life, doing things with friends, having good self-care and putting your phone down at certain times, like at the dinner table,” Dr. Hord said. “Showing your kids that this is important to you will help them learn to value these habits.”