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.”

Talk about feeling grateful. Chris Kidwell introduced his son, Carter, to his hero just days before Thanksgiving in the lobby of Simon Family Tower at Riley Hospital for Children.

The reunion between Kidwell and renowned heart surgeon Dr. John Brown came a quarter-century after Dr. Brown last operated on Kidwell when the southern Indiana resident was just a couple of years older than his own son is today.

But his first open-heart surgery with Dr. Brown was as an infant after he was diagnosed with transposition of the great arteries. That was in 1987.

“Chris was the seventh arterial switch patient we did at Riley,” Dr. Brown said. “We started doing them in 1986 – we did three that year – and we did 10 in 1987. The arterial switch is probably the most difficult of operations on newborns, but Chris did very well. It’s a big operation, and we’re doing it on the tiniest of patients,” he said.

Patients typically weigh from 4½ pounds to 7½ pounds.

“It’s lifesaving,” he said. “They don’t survive if you don’t fix the problem.”

During the procedure, a surgeon moves the aorta and pulmonary arteries to their proper positions in the heart, allowing blood to flow to the right places and improving oxygen levels.

He estimates surgeons have performed close to 450 of the procedures at Riley in the past 38 years. In fact, Dr. Brown, who semi-retired in 2020, assisted Dr. Mark Rodefeld with just such a surgery earlier this year.

Reuniting with former patients is always a pleasure, the surgeon said. “It means a lot. It’s been a good day when you’ve helped another human being survive or do well.”

If he had it to do over again, Dr. Brown, who will turn 80 in February, said he would pick the same profession.

“It can be stressful; there’s a lot on the line every day. You’re taking a risk with a life every day that you’re in the operating room, but your training and the team you work with help you pull it off,” he said.

That team includes the nurses, anesthesiologists and cardiologists, he said. “There’s a whole lot of people who make it possible for these guys to survive.”

Kidwell, whose son also underwent a heart procedure earlier this year, peppered Dr. Brown with questions during their meeting last week.

“One thing I remember from that day (his second surgery at age 11) is reading a Dr. Seuss book to my little sister,” he told the surgeon. “And then you came out and said, ‘I’m Dr. Brown, and I did your first surgery. On a scale of 1 to 10, with 10 being the hardest, this is like a 4, so you have nothing to worry about.’ I always remember that,” Kidwell said.

And for the most part, that’s been true. Kidwell has been able to live a pretty normal life, thanks to the lifesaving care he received at Riley.

“I took a look at your last echo from 2021,” Dr. Brown told his former patient. “It looks perfect.”

The 37-year-old Kidwell said he takes good care of his heart and will see to it that his son does as well.

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

Ainsley Miller and Katie Donovan are relatively new to the outpatient therapy team at Riley Children’s Health, but they are not new to Riley.

Both Donovan and Miller started their careers at Riley working on clerical teams but knew that they wanted to pursue patient-facing jobs, supporting kids and their families.

The transition has been everything they hoped it would be.

Donovan, who earned her undergrad degree in exercise science at IU Bloomington, went back to school while working the front desk in the rehabilitation services therapy department at Riley. She earned an associate’s degree from UIndy to become a physical therapy assistant.

She splits her week between the Riley Outpatient Center, where she works with kids of all ages, and IU Health North Hospital, where she works with adults who are inpatient.

“I’ve learned a lot up there, but kids are definitely where I want to be,” Donovan said. “I love the variety when you’re working with kids. And I’m playing with toys all day long, so I’m not mad about that.”

Of course, her job involves a lot more, but there is something about the joy of a child learning a new skill or a parent seeing progress and potential that never gets old.

“Kids are fun because they are learning and changing every day, growing in different ways regardless of a diagnosis,” she said.

“A lot of the job is education with parents, which intimidated me at first, but they are the ones doing a lot of the work at home,” added Donovan, who works with two supervising physical therapists. “It’s really important to empower parents and kids and not scare them.”

Miller’s Riley story started with an externship at a satellite clinic in the fall of 2020 during her undergrad program. She started grad school at UIndy in occupational therapy in January 2021 and worked in a supplemental staff role at the hospital three days a week for several years.

After graduating in May, getting married and passing her board exams over the summer, she began her full-time position as an occupational therapist at Riley’s Healthplex clinic at 38^th Street and Guion Road in September.

“I see mostly kids from (ages) 2 to 9, with autism or developmental delays,” she said. “So much of our lives as adults are the same day to day. I knew I needed something different, so that’s where kids come into the picture. They present differently with different diagnoses, and they also just come in with their own stories. We get to come alongside and be friends with them through the process.”

While building relationships with patients and parents is rewarding, Miller added, it’s also exciting to have a career where you can be creative and empowering and present solutions.

“We are very lucky to have both of them on our team,” said Jenna Trost, supervisor for pediatric outpatient occupational therapy. “I think our whole outpatient team enjoyed connecting with them in their clerical roles and also enjoyed learning about their progress with school, watching them graduate, take their board exams, and then start working as clinicians.”

Both have been able to transfer skills they learned in their clerical roles to their new careers. Miller said she used to be nervous to talk on the phone, but that is a big part of the job in a clerical setting.

“That got me out of my comfort zone very quickly, and now I have no problem talking to parents on the phone. I think being able to adapt in that role has helped coming into the therapy role, just learning how to read parents and take some of their frustrations and concerns and hear them, but also offer solutions. I see a lot of carry-over from those roles,” Miller said.

When asked what is the best part of their day, Donovan and Miller are quick with their replies.

“Seeing patients do something new,” Donovan said. “Today, I had a mom come in and tell me their child passed his sleep study and he’s off (supplemental) oxygen. Last week, he said, ‘Mama.’ She is so happy, and I just love that.”

For Miller, it’s about “getting to feel like a kid again,” she said. “Getting on the floor and playing with them and having fun makes it feel not like work. I spent an hour running around the room with the Paw Patrol guys.”

Over time, she said, she gets to see how that activity in the therapy room progresses into independent skills.

“This morning, I had a kiddo who was struggling to get up on the slide. He didn’t have the confidence, but after practicing, he did it on his own and then didn’t want to get off,” Miller said. “The small things are so fun to see.”

The secret about physical and occupational therapy for the little ones is that it mustn’t seem like work.

“We want therapy to be a safe space and a fun space,” Miller said.

Whenever things get hard, whether at work or in life, the two therapists need only look down to re-center themselves. Both have tattoos on their arms that are meaningful to them.

Donovan finds strength in a quote from “Harry Potter”: “Happiness can be found even in the darkest of times.” And Miller draws comfort from the first two words of Psalm 46:10 from the Bible: “Be still.”

“I kind of forget I have it sometimes,” Miller said.

But it’s a reminder for her to take a deep breath and be still.

“You don’t have to rush through life. Honestly, it’s like a daily reminder with some of these kids. Let’s take today as it comes. We don’t know what tomorrow holds.”

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

Gianna Knight is a whirlwind of activity. The 11-year-old has a busy calendar filled with dance, ice-skating, volleyball, church and school.

And she does all of it with a heart condition.

Diagnosed with hypertrophic cardiomyopathy as a baby, she has been in the care of the Riley Children’s Health cardiology team since 2016.

The sixth-grader, who lives in Highland, Indiana, with her parents, Jim and Mandy Knight, was born with a heart murmur, but it wasn’t until her six-month checkup – when her pediatrician didn’t like the sound of the murmur – that she was referred for further testing, which revealed the condition.

Hypertrophic cardiomyopathy is a chronic heart condition that causes the heart muscle to thicken, making it harder for the heart to pump blood. Symptoms include shortness of breath, chest pain, fatigue, dizziness, fainting and an irregular heartbeat.

There is no cure, but it can be managed with medications or, depending on the severity, other more serious interventions, including surgery, might be necessary.

Patients with the condition are advised to avoid competitive sports and intense workouts, but thanks to the support she has received at Riley, Gianna is able to pursue her passions, within reason.

“She doesn’t do soccer or basketball, but she is very active,” Mandy Knight said about her daughter. “They are happy with her activity level.”

And Gianna and her parents are happy with their Riley team, which includes cardiologist Dr. John Parent and nurse practitioner Nichole Gralia, who leads the cardiology advanced practice provider team.

“Dr. Parent and Nichole are worth the (three-hour) trip to Indy,” Mandy said. “The whole staff has been super great.”

Gianna was 3 when she first came to Riley, and she was among the earliest patients to benefit from the hospital’s cardiomyopathy clinic, which was established in 2015 and accredited by the Children’s Cardiomyopathy Foundation in 2017 for its high-quality cardiac care and specialized disease management for children with cardiomyopathy.

The CCF renewed Riley’s accreditation status as a Cardiomyopathy Center of Care program this year.

“Gianna is a good example of why this clinic works,” Dr. Parent said this week. “Kids who present so early with hypertrophic cardiomyopathy are relatively rare. We probably get five to 10 a year at Riley, and we always do a very thorough workup.”

That includes seeing Dr. Parent, who looks at their heart, as well as meeting with a cardiovascular geneticist and a genetic counselor, who can provide context and education, depending on what the results show.

The clinic is able to integrate virtual visits with families who live a long distance from Riley, as Gianna does. As her condition has stabilized over the years, she has been able to reduce her in-person visits to Riley to once annually, paired with an additional virtual visit to review the results of cardiac monitoring.

In between those visits, of course, Mandy said the team makes itself available if any questions or concerns pop up.

“Dr. Parent always responds to my messages so quickly. He’s really sweet, and Nichole is very kind and patient as well.”

Thinking back to those early days when Gianna was a baby, and her parents first learned about the diagnosis, they were naturally concerned but also felt blessed, Mandy said.

“We were OK with whatever health issues she had because she was our gift we prayed for. But during the whole process, the unknown was scary,” she added. “No one could tell us if (her condition) will worsen.”

Today, Gianna continues to do well. If anything, Dr. Parent said, she may have even gotten a little better.

“As she’s gotten older, her hypertrophic cardiomyopathy has not gotten worse,” he said. “I would categorize it as mild now. She was on two medicines, and we were able to wean her off one of those. She’s always had really good energy. She’s a very active young lady.”

While the teen years can sometimes present added challenges due to growth, the cardiologist said there is no reason to think Gianna’s condition will worsen.

“Our expectation for patients with hypertrophic cardiomyopathy is that they will have a normal or near normal life expectancy and have as high a quality of life as possible.”

That could mean activity restrictions down the road, but for now, Gianna is doing well on her medication.

A new medication for more severe hypertrophic cardiomyopathy has been approved for use in adults. Riley is participating in a clinical trial for use of the drug in ages 12-18.

The cardiology and heart surgery programs at Riley Children’s Health are consistently ranked among the best in the nation by U.S. News & World Report.

Long ago at Union Station, there was a lunch counter at the old Depot Restaurant where Riley was a regular, stopping in for his piece of pie and a talk with good friends. One of those friends was Tom Taggart (1856-1929), who early in his career managed that lunch counter. Taggart would go on to become a powerful political force for the Democratic Party in Indiana and the nation, but his lifelong friendship with Riley began at the lunch counter he once managed where he and Riley talked – over pie.

Thanks to partners at the Indiana State Library Rare Books and Manuscripts, which holds copies of original menus from Tom Taggart’s Union Station restaurant, for reviewing Taggart’s menus to find that Taggart served many pies, including lemon, apple, pumpkin, blackberry, cherry, huckleberry and many more.

No date is available as to when the grandfather clock in Riley Hospital’s original lobby was given in memory of Mr. and Mrs. A.A. Fendrick, but the best guess is that the gift of the clock was likely to honor a friendship with Riley forged long ago at the lunch counter at Union Station.

And, just a few other little bites of Riley Hospital’s pie history: Riley loved pie so much he wrote about pie in many of his poems, including “A Gustatory Achievement” and “The Diners in the Kitchen.” Riley even waged a campaign to sway his lifelong friend and two-time Pulitzer Prize winner and celebrated Hoosier author Booth Tarkington to put down his cigarettes and join him at the shrine of pie, but Tarkington blew smoke at Riley’s efforts and refused.

So, this Thanksgiving, in tribute to Mr. Riley: Enjoy your favorite piece of pie, swap stories and Riley’s “pie” poems with friends and family, and celebrate the lasting power of a great piece of pie.

--Compiled by the Riley Hospital Historic Preservation Committee

With their “guardian angel” watching from across the table, siblings Elisa and Julian Montalvo tease each other and talk over each other, weighing in on the best parts of the school day and why chocolate milk is better than white milk.

For Riley Children’s Health neurosurgeon Dr. Laurie Ackerman, it’s not an official office visit, but it is a chance to see the two kids behaving just like kids. Just like she always hoped they would. She peppers them with questions, even sharing stories of her own childhood as they talk.

Elisa, 8, and Julian, 5, were born with craniosynostosis, a condition where seams in the skull close too soon, which can prevent proper growth of the head and brain.

Elisa was diagnosed at about 6 months old, after moving to Indiana with her parents, Francisco and Victoria Montalvo, from Ecuador, South America.

“We were told we needed to see a neurosurgeon at Riley. We were scared,” Francisco said. “We came here, we met Dr. Ackerman and her team, and we were quickly comforted, knowing our daughter was in great hands.”

That was in 2016, and Elisa underwent cranial surgery at Riley to create space for her brain to continue developing. She recovered fully and is now thriving. A third-grader, she loves reading, drawing and playing tennis and wants to be a veterinarian when she grows up.

What Francisco and Victoria never figured on, however, was that their second child, Julian, would be diagnosed in utero with the same condition, as well as a complication called encephalocele, a rare form of brain tissue herniation, that would require additional surgeries and procedures.

On June 20, 2019, which happened to be Francisco’s birthday, Julian underwent a cranial reconstruction at Riley at just 10 days old. The following February, Dr. Ackerman and her team operated on Julian again, placing small metal devices called cranial distractors in his skull held together by screws. Those screws had to be turned a fraction of an inch each day by dad at home for the next month as the skull continued to grow.

It sounds positively medieval, Dr. Ackerman acknowledges, but it does not hurt. And while daunting for the parents, it was vital that they follow the care instructions at home.

“They knocked it out of the park,” the surgeon said. “Mom and dad rose to the occasion.”

The screws were removed in June 2020, on Julian’s first birthday. Up to that point, the little boy’s parents worried about him constantly and watched his every move.

Afterward, however, he quickly began walking, talking and bothering his big sister.

“I love him, but I still think he’s kind of annoying,” Elisa said about her brother.

The kindergartner disregards her comment as he twists in his chair in a Riley conference room. He tells those in the room that he loves math and basketball and wants to be an engineer like his dad.

“I like fixing things,” Julian said. “And I like dinosaurs.”

“I thank God, and I thank Dr. Ackerman and her team here that they’re both doing just fine now,” Francisco said, as his son bounced his head on his chair. Cautioning Julian to stop, Francisco quipped, “Your head is very expensive.”

They can laugh now, but the Montalvos will never forget the shock and fear they felt when each child was diagnosed.

“We never thought we could have the same thing with both kids,” Victoria said. “We were scared, and our family was in Ecuador. But the great people we met here made us feel at home and took good care of them.”

And while they say they look to Dr. Ackerman as their “guardian angel,” the surgeon says the family has an entire cheer squad at Riley.

“We have a whole team of people. I work with three terrific plastic surgeons. It’s also the anesthesiologists, the ICU nurses, the nurses in pre-op, the clinic nurses… It’s never any one person, it’s always a big team effort. You have a whole rooting section cheering you on and helping walk you through this,” she said.

“That’s exactly how it feels,” Francisco agreed.

The Riley team treats 40 to 60 kids with craniosynostosis every year, Dr. Ackerman said, and while having two children in the same family with the condition is more unusual, it’s definitely not the first time she’s seen it.

When she and her team meet with parents who’ve just learned their child has craniosynostosis, she explains the process, but in her mind’s eye, she is already seeing the end result – kids happy and healthy and going to school.

Naturally, it’s harder for parents to see that at the start, she said. But the process is proven.

“We see them a lot in the beginning, when everything is scary and new, and then hopefully we fade more into the background as the children blossom. That’s the way we like it.”

The Montalvo siblings, who return to Riley for yearly checkups, are definitely blossoming, their parents, Dr. Ackerman and the kids themselves agree.

“It’s a family success story. These kids have a marvelous set of parents,” Dr. Ackerman said.

As the holidays near, 8-year-old Elisa wants to share a word or two about gratitude.

“I’m really grateful for my family and for, well, having a life,” she said. “I’m thankful for my dogs and my friends and my school. And I’m very thankful for the doctors that helped me when I was little.”

Francisco echoes his daughter’s gratitude.

“As a parent, no one is prepared for this news,” he said. “Going through it a second time though, we knew the doctors, and somehow in that ocean of uncertainty we felt a lot of trust that we were in the place we were supposed to be and in the right hands.”

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

“There are so many ways to treat and manage scoliosis,” Dr. Drake said. “For severe cases, it often requires surgery, for example a spinal fusion procedure. In less severe cases, the goal is to manage the progression of scoliosis with nonsurgical options.”

What is childhood scoliosis?

Commonly seen in children as they grow, scoliosis is a condition where the spine curves in different directions. Oftentimes the cause is unknown, although it is more common in girls and can run in families. The three common types of childhood scoliosis include:

• Adolescent idiopathic scoliosis (most common form)
• Congenital scoliosis (present at birth)
• Neuromuscular scoliosis (caused by conditions like cerebral palsy)

In addition to the spine curving, scoliosis can sometimes impact other parts of the body, causing challenges such as muscular imbalance, skeletal deformities and behavioral concerns.

What are the nonsurgical treatments?

If you suspect scoliosis in your child, you should visit a specialist, where they will first perform a “forward bend test” to indicate if a curve is present. Imaging tests such as X-rays, CT scans and MRIs may be used to further diagnose. If the provider determines a severe curve (45-50 degrees), surgery is typically recommended. If the curve is mild or moderate, there are several nonsurgical treatment options. These include:

1. Bracing. This is a custom-molded padded shell holding the spine in place. There are different types of braces available, and they work by applying pressure to the spine. Bracing is recommended for children with spinal curves of 20-40 degrees, and it is often used so the curve doesn’t get worse.
2. Physical therapy. The Schroth Method is a type of physical therapy specifically for scoliosis cases. This involves exercises aimed to strengthen the spinal curve.
3. Observation. Regular monitoring by a healthcare professional is another way to treat scoliosis. Frequent observation ensures scoliosis is detected early and treated correctly.

What are the lifestyle modifications and home care tips?

While spinal deformities are different for each child, there are common lifestyle modifications and home care tips you can follow to help with scoliosis, including:

• Ensure your child stretches and exercises regularly to strengthen the muscles of the core, back and lower extremities. This also helps with spinal alignment. Exercises such as yoga, pilates and swimming are good activities for managing scoliosis.
• Follow a balanced diet that includes nutrients like calcium, magnesium and Vitamin D to promote bone health. Such foods may include dairy products, greens, fatty fish and citrus fruits.

What are ways to cope with scoliosis?

Children affected by scoliosis may experience low self-esteem, body image concerns, anxiety and depression. As a parent, you may also experience a variety of emotions. Here are ways to cope with scoliosis:

• Education. Seek advice from a healthcare professional and do your research to fully understand your child’s condition. Knowing your child’s diagnosis is key to navigating the care journey.
• Supportive environments. You should always create supportive spaces and welcome open communication to release emotions. You might also join support groups to connect with others in a similar situation. Additionally, ensure family involvement is a key part of the process.

For more on how to support you and your child, visit SRS.org or curvygirlsscoliosis.com.

How can a parent collaborate with the care team?

When your child has scoliosis, you’ll likely partner with a team of healthcare providers to ensure your child is getting the right treatment personalized to their condition. As you make visits to the doctor’s office, always advocate for your child’s needs and preferences. Additionally, be flexible with treatment plans because as your child grows, needs may change depending on the status of your child’s curvature. Most importantly, ensure you are doing frequent follows up visits with your child’s care team.

Key takeaways

While there are surgical scoliosis treatments available for those with severe spinal curves, most scoliosis cases will be managed with nonsurgical solutions. As you embark on this scoliosis journey with your child, remember to always stay present, as that will be key to elevating your child’s overall quality of life.

“Regarding scoliosis, each case requires a different recommendation and treatment plan, and each child has their own needs. Our goal as spine experts is to provide comprehensive care that minimizes the need for surgery and maximizes positive outcomes,” Dr. Drake said.

For more about pediatric spine care, read this Q&A with Aki S. Puryear, MD, a pediatric orthopedic spine surgeon at Riley Children’s. To schedule an appointment with Riley Children’s Orthopedics, call 317.948.2550. A physician referral is not required.

What is scoliosis?

Scoliosis is an orthopedic condition where the spine curves and rotates in different directions as a child grows. It commonly develops between the ages of 10 – 15 years. If left untreated, scoliosis can lead to a severe spinal deformity, possible pain and decreased self-image. The three types of scoliosis include:

• Adolescent idiopathic scoliosis (most common type)
• Congenital scoliosis (present at birth)
• Neuromuscular scoliosis (caused by conditions like spina bifida and cerebral palsy)

What are the causes of scoliosis?

While the exact cause remains unknown, scoliosis is most common in children and teens as they grow. It is more common in girls than boys, and it often runs in families. Other factors that may cause scoliosis include birth defects, existing neuromuscular conditions or spinal cord irregularities.

What are the physical and behavioral signs of scoliosis?

If you suspect scoliosis in your child, it is important to look for the following physical signs:

• Uneven shoulders or shoulder blades
• Uneven hips or asymmetric waist
• A prominent rib cage on one side
• A noticeable curve in the spine when bending forward
• Muscles that are more prominent on one side of the back
• Clothes that don’t fit properly or hang unevenly

Scoliosis can also affect your child’s behavior. They might:

• Complain of back pain or fatigue after sitting or standing for long periods
• Have body image concerns
• Experience low self-esteem

How is scoliosis diagnosed?

If you suspect scoliosis in your child, early intervention and diagnosis is important to prevent the spinal curve from worsening. Immediately make a visit to your primary care provider, where they will first perform a “forward bend test” to indicate a deformity or curve in the spine. If a curve is observed, you may be sent to an orthopedic specialist to further diagnose workup using imaging tests such as spinal radiographs (or X-rays) and possibly an MRI and CT scan.

What treatment plan is available for people with scoliosis?

Patients will have an individualized treatment plan, depending on the severity of the scoliosis curvature. Some treatment options might include:

• Observation: If your child has mild scoliosis, they will be monitored through regular check-ups.
• Physical therapy: For mild and moderate scoliosis, The Schroth Method of physical therapy is specifically designed for scoliosis treatment, with the goal of creating spinal balance and stability.
• Bracing: Moderate curvatures may require a back brace, or a custom-molded plastic shell holding the spine, with a goal to prevent or limit further curvature of the spine.
• Casting: Casting is a treatment option for toddlers and younger children with moderate to severe early onset scoliosis. Made up of waterproof casting materials or plaster, casts are worn 24/7 to help keep the spine in place.
• Surgery: For more severe scoliosis cases, a physician may recommend surgical treatment to help the spine. The three types of surgery include:
  • Spinal fusion surgery: A common surgery where the surgeon straightens the spine with implants and fuses the spine together.
  • Growing rod surgery: Rods are surgically placed in the child's spine and are regularly lengthened with or without surgery to support spine and lungs as the child develops.
  • Non-fusion surgery: This surgery places implants in the spine to straighten and support spinal alignment as the child grows. Future growth may encourage additional spine straightening.

How can I support my child with scoliosis?

To support your child with scoliosis, always encourage open communication and recognize their resilience and strength to raise their morale. You might also consider joining a support group to seek advice, relay real-life experiences and connect with others facing a similar challenge.

To find additional resources on how to support your child, visit SRS.org or curvygirlsscoliosis.com.

Learn more information

If you suspect your child has scoliosis, call 317.948.2550 to schedule an appointment with Riley Children's Orthopedics. A physician referral is not required. To learn more about Riley Children's pediatric spine care, read this Q&A with one of our pediatric spine surgeons. To learn more about our work treating patients with scoliosis, read this patient story.

They might not sing and dance, but a team of Riley Children’s Health NICU specialists kicked up their heels like the New York City Rockettes to celebrate friendship and their Riley bond recently.

Fourteen ladies with decades of service to the neonatal intensive care unit at Riley gathered Monday for photos as they reminisced about the years they’ve spent together caring for Riley’s tiniest patients.

Organized by longtime nurse Penny Eldridge, the group, which wasn’t able to be together during the #Riley100 birthday celebration last month, represented well over 400 years of service among them, but that number would climb higher if it included a few others who could not attend.

One of those not in attendance was Jo Curtiss, who is closing in on a half-century of service to Riley as a nurse, and for several years has been volunteering with her dog on the pet therapy team.

When Eldridge joined the NICU nursing staff 31 years ago, there were already several nurses who were considered veterans with seven-plus years on the unit.

Many of those, including Susie McSwain and Stacia Nickel, are still in the NICU, where they’ve not only seen tiny preemies survive and thrive but watched as their own daughters followed in their path and joined the nursing profession.

Asked what’s kept them at Riley for so long, most pointed to the deep friendships they’ve nurtured for so many decades.

“I love working with the babies, but I also love working with these girls,” Eldridge said.

She and the others remember a time before private patient rooms when babies and their nurses were together in modules – 10 babies to a module – so the nursing staff got to know each other well, forging bonds and supporting one another through life’s ups and downs.

“Private rooms are the right thing for patients, but it definitely changed relationships,” said Gail Hocutt. Still, she said, “We are family.”

“We grew up together,” agreed Dana Realey. “We all started at a fairly young age here and have gone through all of the growing pains you have being a nurse.”

For Janda Dattilo, having her friends and co-workers on the unit caring for her premature twins so many years ago brought her a level of comfort she’ll never forget.

Those twins will celebrate their 26^th birthday next month.

Back then, babies born weighing 1,000 grams or less (about 2.2 pounds) likely would not survive. The nurses were instructed to keep them comfortable. Now, babies born at 23 weeks and weighing sometimes just over a pound, can survive with excellent treatment.

The Riley Simon Family Tower NICU has 60 patient beds and a nursing team of more than 200.

Mary Fox started her nursing career at the old Wishard Hospital but moved over to Riley as a nurse practitioner three decades ago. Even though she is an advanced practice provider, the nurses “adopted” her into their family back then, she said.

“There were just a few of us back then, and I got to know everybody really well,” Fox said.

For this crew, Riley is synonymous with great care, of course, but also “everlasting friendships.”

“I just love telling people I work at Riley,” Eldridge said.

Those who gathered this week: Angie Sproles and Jennifer York, respiratory therapists; Mary Fox, NP; Marcia Nees and Brenda Hook, retired; Kelly Brock, Stacia Nickel, Susie McSwain, Cassi Barajas, Janda Dattilo and Penny Eldridge, all still working as nurses on the unit; and Dana Realey, Gail Hocutt and Arianna Duszynski, who now work in other areas at Riley.

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

Learn how our pediatric neurosurgeons are leading the way

Interim division chief of pediatric neurosurgery, Laurie Ackerman, MD, is a pediatric neurosurgeon with expertise in traumatic brain injuries, concussions, hydrocephalus, and congenital brain and spine anomalies. She also is a leader in craniofacial surgery in partnership with plastic surgery to treat infants with craniosynostosis.

Rabia Qaiser, MD, FAANS, is a pediatric neurosurgeon who specializes in pediatric cerebrovascular diseases including Moyamoya disease, arteriovenous malformations, aneurysms, stroke, and other vascular diseases that affect children. Understanding the intricacies of the brain is her passion while making Riley Children’s a center of excellence for pediatric cerebrovascular diseases is her goal. At Riley Children’s, Dr. Qaiser’s expertise gives patients a new outlook on life.

With special interests in epilepsy and pediatric brain tumors, Jignesh Tailor, MD, PhD, is a pediatric neurosurgeon and physician-scientist actively studying the human brain and how it develops. Dr. Tailor’s research in identifying therapies for halting brain tumor genesis aims to prevent brain tumors and keep children alive. He believes that we can find new treatments to fight brain cancer beyond commonly used surgical techniques and medications.

Jason Chu, MD, MSc, is a pediatric neurosurgeon with specialized training in the surgical treatment of epilepsy. In addition to epilepsy, Dr. Chu performs fetal surgery alongside maternal-fetal medicine specialists for patients with spina bifida and myelomeningocele. He has worked to develop a minimally invasive technique that minimizes the risk of the surgery for the mother while preserving the potential benefits of in-utero repair for the fetus.

Thomas Larrew, MD, MSCR, is a board-eligible pediatric neurosurgeon with clinical and research interests in epilepsy surgery and spasticity surgery, which includes baclofen pump surgery and selective dorsal rhizotomy. He is a leader in our movement disorders program which brings together multiple disciplines to provide personalized care for patients with conditions that impact body movements—dystonia and dyskinesias, spasticity, Cerebral palsy, and tremors.

Together with Dr. Chu, Dr. Larrew is involved with the comprehensive epilepsy program to improve diagnosis and treatment options for patients with refractory epilepsy.

Partner with our skilled team

Our pediatric neurosurgery program is ranked among the top programs in the nation by U.S. News & World Report. We offer the highest level of skill and resources in Indiana, including a Level I Surgery Center verified by the American College of Surgeons and a Level 4 Epilepsy Center verified by the National Association of Epilepsy Centers. With our expert team and access to acclaimed programs, we provide comprehensive pediatric neurosurgery care.

Refer a patient by calling 317.944.6201 or refer a patient online.

Chris Kidwell was a baby when he had his first open-heart surgery – under the skilled hands of the renowned Dr. John Brown – at Riley Hospital for Children.

He was 11 when Dr. Brown operated on him a second time.

Diagnosed with D-transposition of the great arteries when he was born in Bedford, Indiana, on Good Friday 1987, Kidwell was rushed to Riley for an arterial switch surgery at just 6 days old.

During the relatively rare procedure, a surgeon moves the aorta and pulmonary arteries to their proper positions in the heart, allowing blood to flow to the right places, which improves oxygen levels and helps the heart function better.

Kidwell, now 37 and living in Orleans, Indiana, says he has lived a relatively normal life, despite the surgeries. He hiked a 13,000-foot mountain in Colorado last summer. He became active in martial arts and taught jujitsu for many years, always surprising people when they learned he had endured two open-heart surgeries, yet he could dominate on the mat.

He turned that passion into a doctoral degree, focusing on developing organizational leaders through the concepts of martial arts principles.

His own Riley story took on an added layer earlier this year when his son, Carter, 9, was diagnosed with an atrial septal defect that required a repair at Riley in March.

Carter had always had a heart murmur, but it wasn’t until his cardiologist in Bloomington ordered an echocardiogram that they realized how serious it was.

Fortunately, doctors were able to correct the defect without opening Carter’s chest like his father had experienced.

“Although I hated hearing that he would need to experience something that I did as a child, I am grateful that the skilled physicians at Riley were able to prevent the failure of his heart due to this defect,” Kidwell said.

He remembers the days and nights leading up to the procedure when he would try to calm his son’s fears by playing a song from the 1990s that soothed him when he was a child.

“Lullaby,” performed by Shawn Mullins, with the chorus “Everything is gonna be all right,” is what both father and son replayed on the radio and in their heads as they faced their fears.

There was never a doubt that Riley was the right place for Carter to receive care, Kidwell said.

“I told him, ‘Riley took care of me, and they’ll take care of you.’ I’m alive today and that speaks for itself.”

Carter, a third-grader, is fine now, Kidwell said, and the two are even closer than they were.

They are heart buddies, or “cardiac compadres,” Kidwell likes to say.

“Carter is my shadow. Anything I want to do, he is all about it.”

Whether playing video games, squirrel hunting, kayaking or kickboxing, the two share a bond beyond father and son, and now that Carter is recovered and doing well, Kidwell is grateful for all of it.

He follows up with his cardiology team at Riley, primarily because he said other cardiologists who haven’t dealt with pediatric heart patients don’t have the same understanding of his congenital condition.

Kidwell learned more about his surgeries by studying his medical records when he was in his 20s. He had wanted to join the military, a path he was not able to take because of his heart history.

After learning how involved the surgeries were, he wrote a “thank-you-for-saving-my-life” note to Dr. Brown, who responded with a note of his own, encouraging Kidwell to continue taking care of himself. Kidwell has kept that note for well over a decade.

The last time he was at Riley, he received a good report, he said.

“They said my heart looks remarkable, so I guess I’m doing something right. I take care of myself and my heart.”

At 6-foot-3, Dr. Robert Darragh is a towering and respected presence in the halls and clinics at Riley Hospital for Children. But to borrow one fan’s description, he’s also a “big teddy bear.”

You only have to crack the somewhat gruff exterior to find the gentle giant within – a man beloved by his patients and colleagues for his clinical skills and big heart.

The latter – the heart – is most appropriate because Dr. Darragh is a cardiologist, now in his 36^th year at Riley. He has walked alongside countless patients as they prepared for and recovered from the miracle of heart transplant.

He has bared his own heart with those patients, encouraging them through countless procedures, celebrating them at graduations and weddings, and yes, sometimes mourning them at funerals.

It all comes with the job. A job that the Pittsburgh native who hailed from a family of attorneys has loved since he stepped through Riley’s doors in 1989 as a young husband and father, excited to join a cardiology program that was poised to do great things.

“Dr. John Brown and Dr. Randy Caldwell had just started the pediatric heart transplant program here,” he said, at the time one of just a handful in the country.

“It was new and interesting and exciting. We had a relatively small group at the time, and there was ample opportunity for me to grow as a young cardiologist with a group of people committed to patient care and a community that was very supportive of the hospital.”

An animal lover, Dr. Darragh once thought he wanted to be a veterinarian. In fact, he and his wife, Annie, parents of two grown children, love dogs and horses. (Their daughter is an equine veterinarian.) They’ve owned several over the years and currently keep two horses in Noblesville, an expensive passion, he acknowledges.

“Buying a horse is cheap; owning a horse is expensive,” he joked. “They eat money.”

That’s one reason you won’t find him playing golf at a country club.

With horses as a hobby, human medicine won his heart, and patients like Kobe Brannan are grateful for that.

Brannan’s life has been in the cardiologist’s hands since he was born 26 years ago in Terre Haute and was rushed to Riley with a failing heart. Brannan has received not one, but two heart transplants, the first as an infant and the second a decade ago as a teenager.

Two years ago, Brannan did what a younger version of himself didn’t dare dream possible. He married the love of his life, and there to celebrate with him was Dr. Darragh, as well as transplant coordinator Debbie Murphy.

The man is a giant in Brannan’s eyes.

“He is serious and means business when he gives advice about medicines and my health,” Brannan said. “I trust and never doubt his plan.”

At the same time, the young man said, he and the doctor can talk for days about sports and the world.

“My clinic visits are never dull,” Brannan said with a chuckle.

Even now, at 26, Brannan should be transitioning to the adult cardiology world, but he appreciates that Dr. Darragh has not pushed him before he is ready.

“I appreciate Dr. Darragh for so many reasons. He has been the best.”

Murphy, who has worked alongside Dr. Darragh for decades, says “Dr. Bob” (as he is called by many of his patients) is the “ultimate doctor.”

“He has been key in the success of our pediatric cardiac transplant program, having joined the program shortly after it opened. For years, he has been on call 24/7,” she said.

“In the almost 25 years that I have directly worked with him, he has graciously given his full attention to any problem that one of his transplant patients may have, whether it was 2 p.m. on a Wednesday or 3 a.m. on a Saturday night,” Murphy added.

She could not have been successful in her own position for such a long time, she said, without the care and attention he shows patients and their families.

“While he is a cardiologist, he is always thinking as a pediatrician,” she said, “finding just the right way to mesh with a patient, whether it’s talking football, golf or playing in a band.”

Or perhaps watching videos with a young patient of garage doors going up and down, a quirk Murphy said she found absolutely “endearing.”

“He also excels as a teacher,” she said. “Countless nurses, residents and fellows have learned from him over the years.”

While he was hired as a transplant cardiologist at Riley, he’s always been more than that, Dr. Darragh said.

“I’m a jack-of-all-trades guy. I joke that I was the sixth person hired in the group and I felt like the sixth man on the basketball team.”

Lucky for Riley, he said, he’s a much better cardiologist than he was a basketball player.

He was the first person doing fetal Echoes at Riley, though now that team has grown substantially. He specialized in interventional cardiology for a while and served as the team’s EP (electrophysiologist) doctor, specializing in the heart’s electrical system and irregular heart rhythms.

Along the way, he and his wife got involved in supporting patient families who started a heart transplant Christmas party annually. For a while, they hosted the event at their church, but for the past several years, the party has taken place at the NCAA Hall of Champions in Downtown Indianapolis.

He can often be seen wearing reindeer antlers at the holiday party, a treat for the younger kids, who ask for pictures with him as if he were one of Santa’s reindeer.

That long-term connection with patients and families is a big part of the draw for Dr. Darragh.

“It’s the kids and the families that have kept me here,” he said.

Even when those “kids” aren’t kids anymore. Patients with congenital heart defects continue to come to Riley for care.

“I’ve grown up with these patients in a sense,” he said. “Taking care of a 35-year-old heart patient is something I’m comfortable doing, but I can’t really expect a lot of my younger colleagues to do that. They are pediatricians.”

At 67, the cardiologist acknowledges he is slowing down a bit, partially due to a knee replacement but mostly due to the young crop of cardiologists who are coming up in the ranks behind him, eager to learn and grow.

He no longer rounds on the Heart Center or CVICU, where he spent so much time, but he does find himself there occasionally when one of his longtime patients has been admitted or when he is asked to consult on a case.

While still a member of the transplant team and an associate professor of clinical pediatrics, he spends more time these days in the Riley Outpatient Center, particularly in the Echo lab, where he is associate director. He reads patient Echos and consults on care, and he performs fetal Echos on pregnant patients.

“I’m a sounding board for my young partners when they are trying to work through a complicated case,” he said. “I enjoy that a lot.”

He naturally collaborates with Riley’s heart surgeons, a team he would put up against any in the country.

One of those surgeons, Dr. Jeremy Herrmann, describes Dr. Darragh as “a sage of the Heart Center.”

“I always value his tremendous insights, especially for complex cases,” Dr. Herrmann said. “He is a staunch advocate for his patients, including those who may need a heart transplant or other advanced support.”

But it’s not just the skilled surgeons, nurses, physicians and support staff who make the Riley team so good, Dr. Darragh said. It’s Child Life, the school program, music and art therapy, in addition to the other more standard therapies, that help heal patients.

“It’s all of the things nobody is going to pay for from an insurance standpoint, but they are all part of the critical care for kids in a hospital, especially kids who are going to be here for long periods of time.”

It’s all part of the heart of Riley, he said.

“The heart of Riley is the kids and what we can do for those kids. People who work in a children’s hospital for any length of time do it as a passion. It can’t be just a job. There are a lot of kids going through tough things, and you have to help them through it. That can be mentally taxing on anybody.”

That heart shines through in Dr. Darragh, says Echo technician Nancy Kehlenbrink, who calls her colleague a “big teddy bear.”

“He’s one of the most brilliant doctors I’ve ever met but also one of the kindest to his patients. They all love him. And we all love him.”

Riley’s cardiology and heart surgery programs continue to be ranked among the best in the country by U.S. News & World Report.

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

“Stroke in children is a life-threatening condition,” Dr. Jackman said. “As a parent, it’s important to recognize the signs of stroke and how to respond to it. With early recognition and treatment, stroke can be a manageable condition.”

Understanding pediatric stroke

A pediatric stroke occurs when the blood flow to part of the brain is interrupted. When this happens, the brain does not receive the blood and oxygen it needs to function, causing damaged brain cells. Stroke can occur at any age, although it is most high risk in children with sickle cell disease, blood clotting disorders or abnormally formed blood vessels in the brain. Other risk factors may include heart problems, high blood pressure, birth defects or head injury. There are two main types of strokes in children:

1. Ischemic stroke: Occurs when the blood flow to the brain is blocked
2. Hemorrhagic stroke: Occurs when a blood vessel bleeds into the brain

Recognizing pediatric stroke symptoms

Strokes symptoms often start abruptly and do not resolve quickly. Here are some of the common pediatric stroke symptoms to watch for in adolescents and teens:

• Weakness or numbness on one side of the body
• Difficulty speaking or understanding speech
• Changes in behavior or thinking
• Vision problems in one or both eyes
• Abrupt formation of severe headache without a prior history
• Dizziness or sudden loss of balance or coordination

For newborns and toddlers, symptoms of stroke might include seizures or a noticeable drop in alertness.

Responding to a stroke

Once you’ve recognized a stroke, it is important to stay calm and call 911 immediately.

"Time is essential for pediatric stroke," Dr. Jackman added. "The quicker you can respond, the better the chances are of minimizing your child’s blood damage."

Diagnosing a pediatric stroke

Diagnosis begins with a simple review of symptoms and health history. From there, a physician will likely perform several diagnostic tests, such as:

• Brain imaging, like an MRI or CT scan, to detect brain injury or blood clots
• Blood tests to check for any underlying conditions
• Heart tests to assess if a heart problem may have led to the stroke

Preventative measures and lifestyle changes

Some children may be prone to more strokes in the future. While not always preventable, there are ways to reduce these strokes:

• Follow up regularly with your primary care provider
• Take medications as prescribed
• Encourage a healthy lifestyle, such as regular exercise and a balanced diet
• Avoid smoking and exposure to second-hand smoke

While a pediatric stroke can be overwhelming to navigate, knowing how to recognize the signs and respond quickly can greatly protect your child’s health and improve their overall wellbeing.

“The care team here at Riley Children’s is always committed to staying at the forefront of pediatric stroke,” Dr. Jackman said. “We’re always looking toward the most advanced technologies and research to minimize stroke and offer children the best chance of recovery and quality of life.”

Watch this webinar to learn how Riley specialists approached standardizing genomic care and rGS in the NICU, and learn more about the results:

• Many different symptoms are seen in the NICU that indicate possible genetic disease
• Many unique genetic diagnoses are found in NICU patients
• Families overwhelming want genomic testing for their babies
• Allows for equitable access to genomic care
• A 50% increase in genetic disease detection
• Shorter lengths of stay in the NICU

At Riley Children’s, the Perinatal Genomics Program offers comprehensive clinical care, education and research for neonatal genetic disease. See how Riley Children’s is leading the way in providing innovative care for critically ill newborns.

“It’s important to maintain a relationship with your child provider so they can get to know your child and provide them with the best possible care,” Dr. Allen said. “Relationships build trust, so finding a provider you feel comfortable with is so vital.”

When should I make a visit to my pediatrician?

When your baby is born, you will need to schedule a pediatrician visit within 24-72 hours after discharge from the hospital. At the time of your visit, your pediatrician will do a full head-to-toe exam. They will also check for common newborn issues.

Following your first appointment, consistent well-child visits are recommended to continue monitoring your child’s health. During the first year of life, the American Academy of Pediatrics (AAP) recommends monthly pediatric visits at 1, 2, 4, 6, 9 and 12 months of age.

How should my baby be growing?

Your primary care provider will evaluate your child’s growth during well-visit exams. Generally, babies follow the same basic guidelines as they grow:

• Weight: In your newborn’s first few months, they should gain about one ounce a day. Their weight should double at about 4 months of age and triple by 1 year of age.
• Height: Your baby should grow about one inch a month in their first few months of life. From 7-12 months, they should grow about half an inch per month. By 1 year of age, their height should increase by 50% from what it was at birth.
• Head size: By 1 month old, your baby’s head will grow about one inch in circumference. From 6-12 months, your baby’s head will grow about a quarter inch per month.

How should I be feeding my baby?

Whether you do breast milk, formula or a combination of both, you should always stick to a consistent feeding schedule. Most newborns need 8-12 feedings a day. At 6 months old, you can start introducing solid food to their diet, in addition to their milk. If you notice your baby is not sucking or rejecting their food, seek guidance from your provider or visit a lactation consultant.

What does a typical sleep schedule look like?

On average, your baby’s sleep schedule should involve 15-17 hours of sleep time. This is most important during their first few months of life. By 9-12 months, your newborn should be sleeping about 14 hours a day.

What vaccines does my newborn baby need and when?

Your newborn will need a handful of vaccines during the first few months of their life. The AAP recommends following their planned childhood vaccine schedule to ensure prevention.

“The recommended schedule by the AAP is the best schedule to follow to protect your baby and prevent the spread of illnesses,” Dr. Allen said. “When you follow an alternative schedule or even spread the vaccines out, this puts children and communities at risk for serious and preventable illnesses.”

What developmental milestones should my baby be reaching and when?

Your baby should progress in areas like motor skills, social behaviors and cognitive development. According to the AAP, here are some of the developmental milestones your baby should be reaching and when:

• At 1 month:
  • Sucks well
  • Cries out distress
  • Gazes at black/white objects
• At 4 months
  • Rolls from front to back
  • Stares at familiar faces
  • Sits with trunk support
• At 6 months
  • Reaches with one hand
  • Touches reflection and vocalizes
  • Bangs and shakes toys
• At 12 months
  • Stands well
  • Points to objects
  • Takes steps

What do I do in case of an emergency?

In a medical emergency, your baby may show some of the following:

• Seizures
• Trouble breathing
• Passing out or blacking out
• Coughing or throwing up

If you notice these signs, immediately call 911. For more about when to seek appropriate care, view our symptom guide.

While your baby’s first year will be full of change and uncertainty at times, asking the right questions and knowing what to expect can put you at ease. Fortunately, you’ll never have to navigate the journey alone with our experts here at Riley Children’s.

To learn more about pediatric care, visit primary care at Riley Children’s.

For as long as she can remember, Roxanne “Roxy” Klampe knew she wanted to embrace a career of service.

Caring for the fragile patients on the pediatric intensive care unit at Riley Hospital for Children embodies that sense of greater good, but Klampe, who was recently recognized with a DAISY award for her clinical skills and compassionate care, got her start in the military.

“I’ve always wanted to help others and make a positive impact on people’s lives, and I’ve always strived to push myself to be the best that I can be,” the nurse said. “The PICU wasn’t the first place that I found to do that.”

Immediately after graduation from Monrovia High School, the Mooresville native joined the U.S. Navy and jumped on the fast track to become a medical specialist for the Marine Corps. She trained in Texas and North Carolina before being stationed at Camp Pendleton in California and eventually deploying with the CLB13 (Combat Logistics Battalion 13) in Africa.

She met her husband, Zack, while serving, and the two have been married for 10 years. They have two children.

All of it has been good training for her career at Riley, which began nearly two years ago in the PICU.

In the military, medics are trained to run toward the action to help the wounded. The same is true in healthcare.

“The PICU reminds me so much of my time in the service,” Klampe said. “When I was in the military, I feel like we got through tough times because we had one another to lean on. We were like one big family. And I truly feel like the PICU is the same. From the nurses, doctors, secretaries and techs, we all experience such highs and lows together as a team and we get through it together. I couldn’t be a PICU nurse without that entire team.”

Kati Townsend is grateful that Klampe chose to set her sights on nursing after leaving the military. Townsend and her husband, Charles, rushed their 1-year-old daughter, Helena, to Riley in early September with pneumonia.

But it was an allergic reaction to penicillin that made things worse. During that time, Townsend said, Klampe’s “confidence, positivity and empathy felt like an anchor to me.”

“I could feel my mindset shift and my gratitude rise when Roxanne and Dr. (Marie) Traylor told us that there was no better place to find out our daughter was deathly allergic to something than in the middle of Riley Hospital surrounded by a capable team of medical professionals,” Townsend said, rather than finding out alone at home.

“I feel a profound sense of thankfulness that we came to Riley, listened to all the tests they wanted to run, and saved both my daughter and myself from a scary situation at home,” she said.

“Roxanne was so patient with us and told us we could ask questions as many times as we wanted, because in the middle of something like that sometimes it takes four to five times for something to sink in.

“It is a comfort to know that when my children need medical care, I don’t just choose Riley because of proximity, but because it really is the best hospital,” she added. “Thank you, Roxanne, for caring so well for my Helena!”

Townsend, whose husband is active duty with the U.S. Navy, was surprised and delighted to learn later that Klampe is a veteran herself.

“That’s awesome,” she said. “I had no idea!”

While her military training serves her well in her nursing career, Klampe said being a mom is also excellent experience.

“When I come in a patient’s room, I think about how I would want to be talked to, how I would want my daughter to be cared for. I check myself at the door and put myself in the family’s shoes,” she said.

“Having a loved one admitted to a pediatric ICU can be such a dark and scary place, and I feel like part of my job is to be a light during their time of darkness. I feel I was able to do that for this family. Patients like Helena and her family are my reason why.”

As for the DAISY, she said, “It's an amazing feeling to be recognized for doing a job that you love.”

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

Two kindergartners reunited on the ninth floor of Riley Hospital for Children recently, nearly five years after they were introduced to each other as babies, both dealing with the same urological condition.

Braelyn Moore did most of the talking in the 9W playroom, as a sleepy Charles Wahnsiedler relaxed in a wagon, watching as Braelyn made sand art before he decided to join in.

Nearby, parents JT and Megan Wahnsiedler and Bethany Moore talked about the support they receive from one another as their kids face a difficult diagnosis.

Both children are recovering from their second surgery – in this case, bladder augmentation – for bladder exstrophy, a rare birth defect in which the bladder develops outside the body in utero. Riley pediatric urologist Dr. Richard Rink performed both surgeries at Riley on Oct. 17.

Nearly five years ago, just as the COVID pandemic locked down the world, the two had their first surgery as babies, with Dr. Rink operating on them then as well.

“We literally saw Indy close down around us from our room,” Moore said about those early days in March 2020 when the world faced its biggest health crisis in 100 years.

Braelyn was about 6 months old then, while Charles was 14 months old. Both children were born at Deaconess Hospital in Evansville – the Wahnsiedlers are from Evansville, and Bethany and Lucas Moore are from Ellery, Illinois, about an hour from Evansville. Both families have three kids, ages 3, 5 and 8.

“We just love little Charles,” Moore said. “He’s our buddy. Charles is our calm and quiet man. They balance each other out.”

“He colored me a Ninja turtle,” Braelyn said, before sharing her top-secret plan to rid Riley of the catheters that she dislikes.

“We’re gonna bust out the window and take all the catheters from the hospital. I’ll plunge myself down the windows, find a manhole and go in,” she said – in all seriousness. “They’ll have to go to Florida to find them.”

Spoken like a true Ninja Turtle. Even Charles smiles at her grand plan.

When the parents of both kids heard the diagnosis of bladder exstrophy, which occurs in about one in every 40,000 births, it was overwhelming at first, but they were connected through a support group and found comfort in knowing that others were going through a similar journey.

“Bladder exstrophy is when the bladder is on the outside and it’s flipped inside out,” Moore explained. “Because of that, Braelyn’s hips weren’t closed either, so in the first surgery, we fixed her hips and moved her bladder back in. In this one, we had to create that bladder neck so hopefully we can potty-train. We’re going back to school and she’s going to be a big kid.”

The two moms bonded after meeting at Riley in 2020 for the first surgical repair. Visitation rules at that time meant only one parent could stay with their child, and the moms won that contest.

“We joked about being quarantined in the hospital,” Wahnsiedler said. “We would see each other in the hall every once in awhile when I would take Charles around in the wagon.”

In fact, the moms have photos from that first admission showing each child in a wagon making the rounds on the unit.

This time around, the families were free to interact, with the kids making crafts in the playroom and the parents talking about their appreciation for their care team.

“Dr. Rink, he’s fantastic, the best of the best,” Moore said. “He is informative and draws everything out so you understand.”

“He doesn’t downplay the surgery, but he makes you feel comfortable,” Wahnsiedler agreed. “He and his team are wonderful. To have somebody who is that good only three hours away is pretty awesome. We go to Riley for urology always.”

Sharon Benjamin is a nurse on 9W who took care of both kids during both admissions and is thrilled to see them doing so well.

“They’re both thriving,” she said. “That’s always good to see. They are the sweetest patients with great families, and their friendship is really cool.”

There may or may not be more bladder surgeries in these kids’ futures, but either way, they and their families plan to stay in touch.

“It will be nice to watch them grow,” Moore said.

Riley Children's Health is ranked No. 5 in the nation for pediatric urology care by U.S. News & World Report.

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

“When I realized it was the 100th birthday for Riley, I knew I had to do something,” she says.

Peters worked at Riley Hospital for Children in 1990. She came to IU Health North over 18 years ago.

“It is especially important to me that families realize that Riley is in more than one location and can provide the same quality care as the main campus. We are one team,” she says.  

To find the 100 facts, Peters searched online through postings about Riley’s birthday as well as news stories. She also wanted to let patients, loved ones and team members get involved. The candles on the wall are hollow. Anyone on the unit can get a token from the unit secretary and place it inside a candle to highlight someone who made an impression on them that day.

This isn’t the only time Peters has decorated the wall. She usually changes it three to four times per year. She began during Christmastime 17 years ago. Now, she uses it as a way to recognize team members, celebrate holidays or even share health tips.

“I hope the staff and families get as much joy from seeing the wall and recognizing each other as I get in doing the wall.”

The team dressed the babies up in costumes for their families to enjoy.

“We love being able to do this for our patients and their families,” says Ashley Brunic, manager of clinical operations for the NICU. “The team enjoys dressing the babies up and the parents are so excited to see the costumes."

This year, the costumes were donated to the unit. They include Peter Pan, Baby Yoda, a police officer, a cheerleader and more.

Talk about a cute little pumpkin. Thiago Iribe Gonzalez got into the Halloween spirit last week, promising no tricks, only treats for his family and care team.

The 3-month-old preemie has been in the NICU at Riley Hospital for Children since his birth at 29+ weeks in July at the Riley Maternity Tower.

His mom, Idania Iribe, and grandmother, Norma Sandoval, couldn’t wait to dress their little prince in his pumpkin suit, complete with a tiny hat and stem, for photos.

Thiago responded with his best scary face and side eye, but really, he just wanted to be in his mom’s arms.

“He’s my little miracle, Iribe said as she snuggled her squirming son while his grandmother hovered nearby. “He’s strong, he’s been through a lot of ups and downs.”

Thiago, who recently marked 100 days in the NICU, was born 10 weeks early, weighing 3 pounds, 9 ounces, but was doing well in the NICU until he developed NEC (necrotizing enterocolitis), a serious gastrointestinal problem that mostly affects premature babies. The condition inflames intestinal tissue, causing it to die.

He suffered other setbacks but has come through like a champ and is nearing the day when he will go home, much to the delight of his dad, Armondo Gonzalez, and his mom.

Iribe has stayed by her son’s side throughout his hospitalization, having to be gently reminded to take breaks for her own health.

“I have to ‘mom’ her sometimes,” said Chelsea Finnegan, one of Thiago’s primary nurses. “She’s my patient, too. She sometimes needs a reminder to go eat or take a breather and I will entertain him while she does.”

Finnegan’s support and that of the other nurses has helped give Iribe the strength and confidence to advocate for her son.

“They listen to me, even if they don’t see a huge difference the same as I do,” the young mom said. “They are very supportive.”

For Finnegan, encouraging parents to trust their gut and speak up is part of her job.

“She’s been very, very good at noticing the smallest differences in him, from being at the bedside all day,” Finnegan said.

Norma Sandoval has been by her daughter’s side throughout the months in the hospital. She is keenly aware of how much this little baby means to his parents.

“He has a little brother (Liam) in heaven,” Sandoval said. “We lost him four days before his due date. Everybody says Liam is holding Thiago’s hand through this, telling him to stay with mom and dad.”

Iribe doesn’t want to miss a moment with her baby, and she captures some of those moments with him from behind the camera, planning elaborate photo shoots and dressing him in cute costumes.

When asked how she has remained strong throughout his ordeal, her gaze lands on him.

“My baby is alive,” she said. “He has a heartbeat. If he is strong and fighting every day, why not me as well?”

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

Alexa Masiongale is fierce and feisty. Just ask her mom and her physical therapist.

Kayla Masiongale and Lindsay Schaefer have watched as Alexa has found her footing again, mentally and physically, after a double dose of lifechanging news.

In July, Alexa was getting ready for a summer of cheerleading competitions when she was diagnosed with acute lymphoblastic leukemia and started a 2½-year treatment journey at Riley Hospital for Children.

Things went from bad to worse for Alexa and her family the next month.

Alexa suffered an infection following her first round of chemotherapy and became septic. Her parents, who live in Muncie, rushed her back to Riley, where she ended up in the pediatric intensive care unit, intubated and on a ventilator for three weeks.

In fact, that’s how she spent her 11^th birthday – on a ventilator.

When she recovered, she had lost the use of her legs.

Alexa has spent the past several weeks in the Riley inpatient rehabilitation unit, working with Schaefer and other therapists as she relearns how to walk and complete everyday tasks.

It has not been easy – for Alexa or Schaefer, they both acknowledge.

“Physical therapy was not always your favorite, was it,” Schaefer said to Alexa during a session last week. “You didn’t start off super happy, but I saw the potential. With a lot of faith … “

“And a willing heart and a cheerful spirit,” Alexa interjected.

That phrase is something Schaefer turned into a mantra to encourage Alexa, especially in the most difficult times when Alexa admits to doing a lot of “screaming and yelling.”

When Schaefer first met Alexa, the sixth-grader could barely sit up or move her hands and feet. She was sad and scared and resisted the exercises Schaefer and other therapists wanted her to do.

“One of the biggest things in Alexa’s way was fear,” Schaefer said. “A big part of physical therapy is helping you feel safe and overcoming those fears, giving you the tools and pushing you through when you feel like you can’t or don’t want to.”

Alexa nodded as Schaefer continued.

“As physical therapists, we would never ask you to do something that we felt you couldn’t do.”

One of the biggest feats Alexa mastered recently was being able to climb up into her bed, which is 26 inches high.

“I couldn’t do that two days ago,” Alexa said.

As she practices climbing stairs and walking unassisted (with only her mom or Schaefer holding her hand), Alexa couldn’t help but be proud of herself.

Even though there are no stairs inside her home, she wants to be able to navigate the two steps outside the house, as well as any staircases at the homes of friends and family.

“It’s even cooler that she’s been brave and worked on doing the stairs while here. We work through things here so we don’t have to tackle the scary things by ourselves,” Schaefer said.

“You are brave, aren’t you,” her mom said. “I wish your dad could be here to see you walk without the walker.”

Kyle Masiongale comes to Riley every night after work, while Kayla has been with her daughter the entire time, except for one day when she had a medical procedure herself.

Discharge day is Wednesday, just in time for Halloween, which Alexa is looking forward to celebrating with her brother, Gavin. She plans to dress up as a health teacher for trick-or-treating.

Alexa, who is under the care of oncologist Dr. Amanda Saraf, has two more years of treatment ahead, but she has fought through so much already.

“Look how far you’ve come,” Schaefer added. “From screaming to sitting up in bed to walking across the room just holding someone’s hand.”

Asked what’s been the hardest part, Alexa said it was the feeling of fear. And the best part?

“Hanging out with her,” she said, pointing to Schaefer.

“It’s definitely been a journey for Alexa and Lindsay together,” Kayla Masiongale said.

To see the progress her daughter has made is nothing short of amazing.

“At first, she didn’t want to talk to anybody. She wanted to be alone. Her life changed in the blink of an eye. Now, she’s a whole different kid.”

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

Overall, Riley Children’s is home to an array of pediatric excellence, providing skilled expertise to children with the most complex diagnoses. Notably, we’re recognized for multiple achievements:

• Since 1924, Riley Children’s has led vigorous innovation and discovery driven by a team-based commitment to advance pediatric healthcare for children, adolescents and their families. We’ve made an impact on children and their families for over 100 years.

• 11 out of 11 of our pediatric specialties are ranked by U.S. News & World Report, with three programs—Urology, Pulmonology, and Nephrology—named among the top 10.

• We’re the ninth-ranked children’s hospital in the nation for research funding and one of the largest pediatric research hospitals in the Midwest. Riley Children’s is home to the Herman B Wells Center for Pediatric Research, where important breakthroughs take place every year.

Within our pulmonology department, our expert physicians are consistently elevating care for patients with respiratory and sleep disorders. Distinctions include:

• Seventh leading pediatric pulmonology program in the nation as ranked by U.S. News & World Report
• One of the largest cystic fibrosis programs in the nation; only program in Indiana accredited by the Cystic Fibrosis Foundation
• Home to the nation’s only multidisciplinary program for patients with Alstrom syndrome
• One of nine pediatric centers in the nation to be accredited as a Pulmonary Hypertension Center of Comprehensive Care

Additionally, our nephrology department uses novel technologies and research to launch new clinical programs that lead to better treatments for children impacted by kidney disease. Key highlights include:

• Ranked among the top 10 pediatric nephrology programs in the nation by U.S. News & World Report
• 12^th pediatric center in the nation to launch aquapheresis
• Home to the first comprehensive neonatal kidney health program; includes both inpatient consultations and outpatient care
• Offers ambulatory blood pressure monitoring for patients with a symptomatic elevated blood pressure; completes more than 400 24-hour ambulatory blood pressure monitor readings annually
• Home to a comprehensive multidisciplinary pediatric kidney transplant program incorporating pediatrics and internal medicine, nephrology, adolescent medicine and psychology

Furthermore, find additional information about our other leading specialties:

• Cardiology and heart surgery: Clinical research at Riley Children’s is delivering novel insights into preventing thrombosis in children with congenital or acquired heart disease. SAXOPHONE explores the safety and efficacy of apixaban—an alternative to standard treatment that offers hope in preventing blood clots in pediatric patients.

• Cancer: Riley Children’s is home to the largest sickle cell program in Indiana with the only NIH-funded telemedicine program in the nation for pediatric sickle cell disease. The program is one of 40 institutions in the National Alliance of Sickle Cell Disease Centers, and only lifespan sickle cell disease center of excellence in the state.

• Gastroenterology: Riley Children’s is one the first children’s hospitals in the Midwest to offer unsedated transnasal esophagoscopy (TNE) to diagnose and monitor eosinophilic esophagitis (EoE). This new TNE technology is available for children and adolescents.

To learn more, view the full annual report.

Angela Seitz could see the fear in the young girl’s face.

Ava St. Louis, 10, had suffered serious injuries to her leg in a golf cart accident.

“A lot of kids are scared walking into the burn clinic, but she just had this look of fear, like this was going to be her worst day ever,” recalled Seitz, a longtime nurse in the outpatient burn unit at Riley Hospital for Children.

“I told her we were going to get through this and she was going to get better.”

Seitz worked her magic – clinically and emotionally – and Ava relaxed in time. On return visits, the young girl was eager to show off the progress she had made.

“Look what I’ve done,” Seitz recalls Ava telling her during one follow-up visit. “I did what you told me to do, and it was hard, but I did it.”

Those moments of satisfaction motivate patients and team members to continue the hard work of healing.

Seitz, who started her Riley career working on the teen unit when the hospital was divided into age-based units, never thought she wanted to work in burn. But her boss suggested she give it a try.

“It only took one patient to seal the deal for me,” she said. “I can still see that patient in my mind to this day.”

It’s not an easy job, but Seitz loves it.

“We have to have a lot of tough conversations that last a long time,” she said. “It’s not just one injury and it’s fixed. You have to remember the trauma behind the injury and deal with the aftermath through healing.”

That means lots of follow-up visits and procedures over the years. But that’s part of what Seitz loves – watching patients grow.

Ava’s mom, Krista St. Louis, saw how her daughter responded to Seitz during months of treatment, and she was moved to nominate the 30-year nurse for a DAISY award, recognizing clinical skills and compassion.

Seitz, a former Margaret Martin Roth Award winner, was surprised by her team recently with the DAISY.

“I was in a patient’s room when all of the sudden my boss was there … and said she needed to talk to me. I’m thinking, what did I do wrong?”

Actually, she had done everything right.

Ava’s mom agreed to share her nomination and photos of Ava for this story:

“Angela is one-of-a-kind,” she wrote. “My 10-year-old daughter was petrified to go to her wound care appointments. Angela was the first person Ava had an interaction with, and she calmed her fears quickly. She listened to her concerns and gave her the reassurance she needed.”

Ava looked forward to showing off her progress on each return visit, St. John said.

“At every appointment, Angela met us with a smile and positive attitude. She made every dressing change bearable for Ava and made it a fun experience,” she said.

“My daughter had a positive experience during a rough time in her life, and it would not have been that way without Angela. She is the best! She makes such a difference in kids’ as well as parents’ lives. Thank you, Angela, for caring for our daughter like she was one of your own.”

Seitz and her husband, Mark, have one son, Ryan, who is a high school senior in Fishers. Ryan is a competitive fisherman, so that’s how the family spends a lot of weekends – traveling to fishing tournaments.

“I am a fisherwoman,” she said. “And a fishing mom. When your son likes something, you learn to like it too.”

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

“Symptoms that indicate a potential heart issue, including pain or pressure in the chest, are also symptoms of conditions that have nothing to do with the heart,” said Laura M. Shopp, MD, a pediatric cardiologist at Riley Children’s Health. “We become concerned about heart problems when chest pain or pressure is sudden or intense, or when it happens during exercise or physical activity. In these cases, immediate medical attention is required.”

Causes of chest pain not related to the heart

Many conditions can cause chest pain or pressure. Some of the most common issues that don’t involve the heart include:

• Chest muscle strain – “There are a lot of muscles in the chest wall and between the ribs that can cause pain and pressure, especially for teens who are very active or those who are just starting to become more physically active,” said Dr. Shopp.
• Lung issues – “It’s common for lung and breathing issues, such as asthma, to cause chest pressure and discomfort,” Dr. Shopp explained. “Heavy breathing from more strenuous physical activity can also cause these symptoms.”
• Acid reflux and heartburn

“Your child’s pediatrician or primary care doctor is the best place to start in evaluating chest pain that’s not an emergency,” Dr. Shopp advised. “They are trained to screen for all types of conditions, including heart problems.”

To determine what’s causing the pain, your pediatrician will likely ask your child:

• What symptoms are you experiencing?
• How intense are the symptoms?
• When do they happen?
• How long do they last?
• What makes the pain/pressure better? What makes it worse?

The initial appointment will also include a medical history focused on identifying heart disease that runs in the family. If a heart issue is suspected, there are simple, noninvasive tests that can be performed to diagnose potential problems. These tests include an electrocardiogram (EKG), which usually can be performed in your pediatrician’s office.

An echocardiogram, or heart ultrasound, is another procedure that can be completed to help detect heart abnormalities. Echocardiograms are typically performed in cardiology offices or hospitals and interpreted by pediatric cardiologists.

Conditions that pediatricians and pediatric cardiologists are looking for with these diagnostic tests, include:

• Issues with your child’s heart rhythm (arrhythmia)
• Undiagnosed congenital heart disease (a heart condition present at birth)
• Undiagnosed cardiomyopathy (heart muscle disorder that affects the heart’s ability to pump blood)
• Inflammatory heart conditions (myocarditis or pericarditis that can be caused be infection)

“If your child develops chest pain or pressure following an illness, it’s important to consult your pediatrician or primary care doctor to rule out any cardiac inflammation,” Dr. Shopp said.

Keeping your teen’s heart healthy

While heart disease is uncommon early in life, the obesity rate for children and adolescents in the United States is concerning.

“About one-third of children and teenagers are either overweight or obese,” Dr. Shopp said. “Obesity puts children at risk for a variety of health problems, including high blood pressure, high cholesterol and diabetes—all of which can cause heart disease later in life.”

A healthy diet and exercise, along with regular checkups with a pediatrician or primary care physician are important at every stage of life, but especially as children are growing into young adulthood and learning to take care of themselves.

Dr. Shopp, a physician with the Preventive Cardiology Program at Riley Children’s, encourages children and teens to follow the 5-2-1-0 approach every day—5 or more fruits and vegetables, no more than 2 hours of screen time, at least 1 hour of physical activity and 0 sugary beverages. As part of an overall prevention plan, the American Academy of Pediatrics recommends universal cholesterol screening for children between the ages of 9 and 11 and then again between ages 17 and 21. Children with a family history of heart disease can be screened as early as age 2.

“High cholesterol, a major cause of heart disease, has no symptoms, and we know that cholesterol can change during puberty, so screening both before adolescence and later in the teen years is so important for maintaining good heart health,” Dr. Shopp said. “Emphasizing a healthy lifestyle—using 5-2-1-0 or another approach that promotes a balanced diet and exercise—can go a long way in addressing some of the health concerns we have about future heart disease for children and teenagers.”

For most of her young life, Bella Simmons has struggled with her weight. It didn’t make sense to her parents. She was active, played three sports and ate nutritious meals. Her entire family was fit.

Yet, the scale kept creeping up. At the age of 10, she weighed twice as much as her fifth-grade classmates. By the summer before eighth grade, she was up to 202 pounds.

Her parents tried to help her, but it wasn’t until they landed in the office of Dr. Sara Naramore in the pediatric gastroenterology, hepatology and nutrition department at Riley Hospital for Children that they found answers.

“That was the day that changed everything,” Bella’s mom said.

By the time Bella, then 13, and Erin Simmons met Dr. Naramore in August 2023, they had exhausted all other options -- diets, nutritionists, therapy. Despite a healthy diet, her body just did not metabolize foods and sugars at a high rate.

"She was classified as having class 2 obesity, which is a chronic illness in itself. People have a hard time understanding that class two obesity is not always a result of eating poorly or little exercise. There are genetic factors that also play a part," Simmons said.

“It’s been quite the journey," the Bloomington mother of two said. “I get emotional about it because it is a journey not only for Bella but also just being a parent and watching your child go through all of these struggles.”

To see her daughter now, though, Simmons is joyful and grateful. Which is precisely how Bella feels. Not because she reached a certain weight, but because she is happy in her skin.

“I see the person she was meant to be," Simmons said. "She’s confident, she’s happy, she is thriving.”

The 5-foot 7-inch Bloomington high school freshman lost 65 pounds over the past year and is now maintaining her weight at 140 with the support of the Riley Weight Management Clinic, led by Dr. Naramore, who prescribed a semaglutide drug for Bella.

Approved by the U.S. Food & Drug Administration in 2021 for chronic weight management in adults, the weekly injectable medicine has also been deemed safe for children ages 12 and older.

Simmons, who comes from a family of physicians, knew about the possible benefits of the weight-loss medications on the market but worried about side effects.

Other than a touch of nausea early on, Bella had no trouble adjusting to the medication, but she is monitored by Dr. Naramore through regular follow-up care, which includes nutritional support.

“Bella is on maintenance now and doing well,” Dr. Naramore said. “She is at a healthy weight.”

Losing that weight (at the recommended rate of 1 to 2 pounds per week) is not just about taking medication, the physician cautions. The medicine is a tool to be used in conjunction with a proper diet and exercise.

But it was key to Bella’s success, her mom said, noting that Bella had been in the 100^th percentile for weight since she was a toddler, despite the family’s active lifestyle and nutritious meals. Her pediatrician told her parents over the years not to worry – that she would grow out of it.

So Simmons and her husband, Derek, former Indiana University baseball coach and now Duke University’s baseball coach, kept their concerns at bay. It was important to them not to transfer their worries to their daughter.

“There’s a fine line dealing with a young girl,” Erin Simmons said. “You don’t want body image issues, so you can’t constantly focus on it.”

At the same time, she said, she felt powerless to help her daughter, even as she saw Bella starting to compare herself to her friends and as other health concerns (pre-diabetes, high cholesterol) began to grow.

When the family moved to Bloomington from Atlanta, it was 2020, right at the start of the COVID-19 pandemic. They didn’t know any local doctors, but after some stops and starts, Bella’s uncle, a cardiologist, suggested they look outside of Bloomington.

Still, it took years of back and forth – partially due to COVID – to find the help they were seeking. Meanwhile, Bella’s parents were worried that her weight was already taking a toll on not just her physical health, but her mental health as well.

“I told the pediatrician that I wasn’t leaving the office until they gave me a referral. We had tried diets and visited nutritionists, and that wasn’t the problem,” Simmons said.

“Dr. Naramore was the first doctor to really sit and listen and see the tears from my daughter. She spoke to her without blame or shame.”

And now, despite suffering sports injuries and having to sit out parts of her softball and volleyball seasons, she is thriving, her mom said.

Bella takes the semaglutide Wegovy, which acts on areas of the brain that are involved in regulating appetite. It increases feelings of fullness, reduces feelings of hunger and reduces the preference for high-fat foods. It also lowers blood sugar by promoting the release of insulin when blood sugar levels are high.

Bella’s blood work shows the physical results. Her cholesterol has dropped to the normal range, she is no longer pre-diabetic.

"She wasn’t prescribed the drug for looks. She was prescribed the drug for pure health conditions," Simmons said. "The weight loss, yes, was a benefit, but the fact that she no longer is prediabetic, or has high blood pressure or high cholesterol and all her levels are now in the normal healthy range is all that matters."

Her mental and emotional health also have improved.

“I’m so incredibly proud of her and all of the hard work she has done and is finally being rewarded," Simmons said. “Finding Dr. Naramore and the entire staff has been so amazing.”

Working with Bella and her family has been rewarding to Dr. Naramore, who is delighted to see the teen doing so well.

“We want everybody feeling good in their bodies and being healthy,” she said. “Obesity is a chronic disease, so we need to treat it like any other chronic disease."

That includes using medications when warranted – just like people do for high blood pressure, asthma and other conditions, she said.

“It’s the way our body’s physiology works. For some people, lifestyle modifications aren’t enough to get them to a healthy weight, so they need extra support to help change the way their body processes and thinks about food,” Dr. Naramore said.

For teens, she said, we should think about it as a form of early intervention, “so they don’t develop these co-morbidities at a younger age that will hamper their long-term health.”

Wegovy and similar medications aren’t for everyone, of course. First, patients are screened for other health conditions and eating disorders. Bella was motivated from the day she stepped foot into Dr. Naramore’s office. That motivation and family support are crucial for success.

“We shouldn’t be afraid to talk about obesity,” the physician said. “It’s a very common condition, and the sooner we treat it, the better. And now we have more options out there to help kids be successful.”

Erin Simmons isn’t afraid to talk about it. In fact, that’s why she agreed to share her family’s story.

“For one Bella, there are a million other kids who are struggling,” she said. “Luckily, I have the background I have, and I would not give up fighting, but there are many other parents experiencing the same thing who don’t know where to turn.”

That lack of guidance and/or access to proper care could have long-term consequences for today’s children, she said.

“You know your child and their potential, and there’s no worse feeling than feeling powerless. Your child should have every capability to be who they are meant to be. If I can help one person and Bella can help one person feel they’re not alone, that there is help out there, that’s what we want to do.”

Emily Acosta had her first exposure to Riley Hospital for Children when she was just hours old. Born four decades ago at another Indianapolis hospital, she was rushed to Riley after she suffered meconium aspiration and became septic at birth.

These days, she rushes from one tricky delivery to another as a respiratory therapist on the Stork Team at Riley, caring for moms and babies in the three-year-old Riley Maternity Tower.

She really has come full circle, and she couldn’t be more satisfied to be where she is today.

Her own birth was traumatic for mother and baby. While she was intubated and struggling in the NICU at Riley, her mom was also very ill and remained at the other hospital recovering for several weeks. Acosta’s dad was torn between being at his daughter’s side and his wife’s.

That early experience placed Acosta on a medical career path, and the only hospital she ever wanted to work at was Riley.

As someone who has dealt with health issues, including autoimmune disease and respiratory illnesses, most of her life, she said she always knew that working in the RT field would be worthwhile so she could help other kids.

“It’s very special to me to work in the place that saved my life,” she said.

Last year, she bumped into Dr. Jim Lemons, one of the neonatologists who cared for her as an infant at Riley, and she made sure to get a photo with him. That connection between her past and her present sneaks up on her sometimes.

“There are moments on certain days that make me remember this is where it all started for me.”

A respiratory therapist for nearly 20 years, she spent many years working in the PICU at Riley, taking care of the sickest patients and advancing into a clinical specialist/educator role.

In the fall of 2020, she moved over to IU Health Methodist Hospital to join the Riley NICU team there, caring for preemies and other medically fragile infants born at Methodist.

When the Riley Maternity Tower opened in November 2021, she moved back to Riley, where she is a member of one of the unit’s Stork Teams: three-pronged emergency teams that include an advanced practice provider, nurse and respiratory therapist, who attend all high-risk births (C-sections, multiple babies, those with identified heart and spinal conditions and other complicating risk factors) – any delivery where resuscitation might be needed.

“We have multiple Stork teams present at all times,” Acosta said. “I just came back from a delivery of twins, so we had two Stork teams present – one for each baby. That dedicated delivery team is really nice to have, and the data show it is making a difference.”

On any given day, there are 10 RTs working as part of a Stork Team, as well as seven or eight on nights, she said.

Moving to the Maternity Tower, where she has also taken on the clinical specialist role, was important to her for many reasons, one of them being the traumatic deliveries she had with her own children, now 10 and 12 years old and healthy.

One of her sons had to be resuscitated after delivery, a fact she and her husband, Brandon, will never forget.

“Every time I resuscitate a baby, I think of my son,” she said.

Although birth plans don’t always end up going the way parents expect, Acosta is passionate about helping moms and babies through any scenario.

While she is a clinical specialist for the Stork Team, most of her focus is on the moms in the OB ICU, she said. She develops and leads training for the RTs who work in the OB ICU.

“Stepping into this role has been amazing for me. I love caring for the babies and moms and creating all the education. It has been awesome to share that knowledge to provide the best care to moms when they’re in the ICU,” Acosta said.

“Throughout my years here, I’ve seen traumatic, heartbreaking things, but I’ve also seen a lot of magic happen and a lot of compassionate people who work here and a lot of really great care that happens in these walls.”

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

At 90 years old, Ollie Fisher has a lot of memories tucked away in her brain. But her experience at Riley Hospital for Children when she was a young girl of 10 is quite clear.

“I just wanted to put in a word for Riley,” the Kokomo woman said by phone on the day the hospital celebrated its 100^th birthday earlier this month. “Between Riley and God, my life has been saved.”

She went on to take the listener on a walk through her life, sharing stories sprinkled with wisdom, humor and love.

Fisher’s introduction to Riley came 80 years ago, thanks to what should have been the simplest of injuries. Then known as Ollie Purvis, she scraped her toe while weeding her family’s garden in Marion, Indiana, one summer day in 1944.

“I was barefoot, of course,” she said. “I was a little kid. Well, a germ got in there and gave me tetanus and lockjaw. After a few days, I couldn’t open my mouth.”

Tetanus is a potentially fatal bacterial infection that causes painful muscle spasms, often starting in the jaw and neck, and progressing to the rest of the body. Other symptoms include headache, fever, sweating, stiff muscles, seizures, high blood pressure and fast heart rate.

A vaccine, developed in 1924 and improved in 1938, can easily prevent the infection, but it was not widely used until 1948, when it was combined with diphtheria and pertussis toxoids to create the DTP vaccine.

Fisher, of course, didn’t know any of this. Nor did her parents. When she told them she didn’t feel well, they were just sitting down to dinner one night.

“I’ll never forget, it was a fried chicken dinner, and I just looked at it. I wanted it so bad, but I couldn’t open my mouth. My dad told me to go in the other room if I wasn’t going to eat, so that’s what I did.”

By the next morning, however, things had taken a turn. Somehow, she stood up, but that was as far as she got.

“I couldn’t take a step. I was stiff as a board.”

Her parents were getting ready for work, and she remembers starting to cry and making noises that sent them rushing in to see what was wrong, but she couldn’t talk through her clenched teeth.

They piled her into a car and drove her to the family doctor. After taking a look at her, the physician instructed her father to carry her out into the waiting room and lay her on the couch.

The doctor then pulled her parents aside and told them the devastating news: “He said I had lockjaw and probably wouldn’t survive. He said I had to go to Riley.”

The drive from Marion to Riley in Indianapolis was torture, she recalled.

“Every time we’d go over a bump, it would take my breath away.”

She remembers being put in an isolation room, where her parents could only look at her through a window of the door. But she also remembers feeling safe.

“They just treated me so well,” she said. “The nurses were so sweet and kind to me, and I made up my mind right then that I was going to be a nurse when I grew up. And I did.”

During her 32-day stay at Riley, she recalls that her brother was also in the hospital in Marion after being hit by a car.

Her father visited her a couple of times, taking a Greyhound bus and sleeping overnight in the bus station.

“When you don’t have a lot of money, I guess you do what you have to do,” she said.

Fisher recovered over the next month at Riley, then went home with no lingering effects, she said. She began her nursing career at Marion General Hospital and remembers later seeing her former doctor who delivered that devastating news to her parents in 1944.

“I worked in the surgery unit, and he saw me and told the other doctors that I was lucky to be here, that my life was saved at Riley Hospital. They were amazed.”

Fisher, who would go on to marry, have a family and work as a nurse for decades, said she sent many a child down to Riley for various ailments (including her own grandchildren), particularly during the years she worked as a school nurse.

“I just loved the children,” she said. “I even helped them with their homework.”

Even though she retired several years ago, she remains “on call” for her family, according to daughter Cynthia Fisher-Elkins, sometimes referring back to her old medical books when someone in the family has a question.

“She comes from strong stock,” Fisher-Elkins said.

Fisher has had other health scares over the years, including three strokes and several falls, but she remains mobile with the help of a walker, and she has many stories to share.

“I’m 90, but I remember everything. I dearly love Riley Hospital, and I felt like I had to talk to someone and tell them.”

Barb Gillaspy might not have memories of her earliest days at Riley Hospital for Children, but the hospital and all of IU Health are a big part of her life.

She was just a baby when doctors diagnosed her with a heart murmur and recommended she be seen at Riley, three hours away from the family’s Jasper, Indiana, home.

Her heart condition eventually became more serious, and as a kindergartner in 1973, she would go on to have open-heart surgery by renowned cardiovascular surgeon Dr. Harold King at Riley to repair the four heart defects associated with tetralogy of Fallot.

When she reconnected with her kindergarten teacher years later, that teacher told her how she used to carry her up the stairs to her second-floor classroom because the weak 6-year-old was not able to climb the stairs.

“It’s amazing what you find out years later,” said Gillaspy, who still has the get-well drawings and cards her school classmates sent her a half-century ago.

The weeks she spent in the hospital helped guide her into a healthcare career later in life. Gillaspy has been a nurse within the IU Health system (and its predecessors) for 33 years.

“So many nurses helped me through my surgeries, and I thought I should do the same,” she said. “I thought I wanted to be a pediatric nurse, but it just never happened.”

She remembers going to school while a patient at Riley in 1973 for several weeks, and she remembers the carousel, but not much else.

She would go on to have yearly checkups with Riley cardiologist Dr. Donald Girod but never required additional heart surgery, a fact for which she is most grateful.

“I know there are patients who have a lot of issues afterward, and I am blessed that I have not had those issues.”

Eventually, she transitioned to adult cardiology care within the Downtown Indianapolis hospital system and earned a nursing degree from Indiana State University.

She worked as a travel nurse around the country for a few years, before coming to Indianapolis and starting work at what was then Indiana University Hospital in 1991.

That’s where she would meet her husband-to-be, Dave, who happened to be the son of one of her patients.

Before she and Dave were married, Gillaspy recalls going back to visit Dr. Girod at Riley. She wanted to know if she would be able to have children.

During that visit, she noticed a thank-you note with a picture she had sent the cardiologist years earlier still posted on his bulletin board. The fact that he had kept that note and photo meant a great deal to her.

Even better, he told her that her heart surgery shouldn’t prevent her from having kids.

She took precautions, of course, and had fetal heart echos done early in her pregnancies, but she and her husband went on to have two healthy children, who are now 31 and 30. The couple also has a granddaughter.

Since 2011, Gillaspy has worked at IU Health Methodist Hospital in the outpatient kidney disease clinic. Early in her time there, the clinic also sometimes saw cardiovascular patients, including those with congenital heart defects like what she had experienced.

“Sometimes we saw patients who needed surgery again on their pulmonary valve, and I got to do pre-op teaching with them as an adult,” she said.

She remembers telling cardiovascular surgeon Dr. John Brown at the time that he couldn’t retire in case she needed a second surgery herself.

Luckily, she said, she has been able to live a full and active life, noting that she and her husband were headed to Eagle Creek Park recently for an 8- to 10-mile hike.

Talking with her mother about that scary time five-plus decades ago, Gillaspy has a renewed understanding of how anxious her parents must have been to watch their little girl go off to open-heart surgery.

But she was in good hands, she said.

“I’m doing great. It was a good repair, and that goes back to Dr. King.”

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

Both Riley and Roosevelt were prolific writers. Riley wrote approximately 1,000 poems, most in rustic Hoosier dialect. Books and volumes of Riley’s poetry and short stories were published regularly and became national bestsellers. President Roosevelt produced more than 30 books, 150,000 letters and countless articles and columns. Three of Roosevelt’s books, “The Naval War of 1812” (1882), the four-volume “Winning of the West” (1889-96) and “Autobiography” (1913), are regarded as American classics.

Both did early recordings of their presentations. Audio recordings of Riley reciting selections of his poetry can be found at the Indianapolis Public Library and in the Library of Congress. Audio recordings of Roosevelt can be found in the Library of Congress and at the G. Robert Vincent Voice Library of Michigan State University.

Riley and Roosevelt preserved the nation’s past, but in different ways. Riley’s poetry was wildly popular and has been recognized for capturing memories of simpler times when change was transforming the country from an agrarian to an industrial society. Roosevelt, as president, took steps to preserve the nation’s natural resources and used his authority to protect wildlife and public lands by creating the United States Forest Service (USFS) and establishing 150 national forests, 51 federal bird reserves, four national game preserves, five national parks and 18 national monuments. During his presidency, Theodore Roosevelt protected approximately 230 million acres of public land.

The two men were accomplished speakers and drew large crowds wherever they were to speak. Famed literary contemporary Mark Twain was said to be reluctant to share the speaker’s platform with Riley, who often stole the show with his humorous poetry. As a speaker, Roosevelt brought great energy, a rousing presence, fearlessness and determination to his delivery. In 1912, he was shot by a would-be-assassin on his way to deliver a campaign speech. He told the crowd once he got there that he had been shot and then showed them where the bullet had been stopped – by Roosevelt’s dense overcoat, steel reinforced eyeglasses and his hefty 50-page speech tucked in his right jacket pocket. Roosevelt went on to talk for 90 minutes before heading to the hospital for medical care.

Two similarities between Riley and Roosevelt that particularly stand out have to do with bears and lasting legacies. One of Riley’s most treasured poems, “The Bear Story,” is a long-time favorite of many. The 1897 poem chronicles the story of Alex, a little boy who makes up a story of his encounter with a bear. President Roosevelt actually had an encounter with a real bear. In 1902, Roosevelt went to Mississippi at the invitation of the state’s governor to hunt for bears. After three days, the president had not spotted a bear. When one of his guides found an old bear that was injured and suffering, the president asked that the old bear be put down to end its pain and suffering, but he refused to shoot the bear, saying it would be unsportsmanlike. Political cartoonist Clifford Berryman picked up the story showing how the president had refused to shoot the bear while hunting in Mississippi. Berryman continued to draw political cartoons featuring President Roosevelt and the bear that kept getting smaller and smaller to an endearing bear cub size. The president who refused to shoot a bear won the hearts of the American public. American and German toy companies started making stuffed bears that became known as teddy bears. The popularity of teddy bears endures today.

Four days after the death of Riley in 1916, prominent friends gathered to talk about ideas for how to honor the Hoosier poet. By 1919, the idea of naming a children’s hospital for him had gathered steam, and Riley Hospital for Children opened in 1924. This month marks its centennial birthday. Three days after the death of Roosevelt in 1919, the Roosevelt Permanent Memorial National Committee came into being, later renamed the Roosevelt Memorial Association. The 105^th annual meeting of the association takes place Oct. 18-20 in Indianapolis. In advance of the meeting, the Indiana chapter delivered more than 100 teddy bears to Riley’s Cheer Guild for distribution to hospital patients.

--Compiled by the Riley Hospital Historic Preservation Committee

Faith Osterburg just celebrated her one-year anniversary as a nurse at Riley Hospital for Children, but she is already making her mark.

In her first full-time nursing job out of school, the Ohio native received a coveted DAISY award earlier this month for her role in managing emergencies with two patients undergoing MRIs.

“It was very unexpected,” Osterburg said about the DAISY honor. “I saw a bunch of people coming in with a huge banner, a big bouquet of daisies and cinnamon rolls and start setting up. I had never seen this before and didn’t know it was for me.”

Until the nurse leaders on hand started talking … about her.

“They said my name, and I’m like, ‘What?’”

Osterburg works in the MRI unit on the first floor of Riley, where she cares for patients who are sedated as they undergo scans for everything from joint injuries to tumors.

Being able to help patients and families through those often uneasy times means a lot to her.

“For some kids, it is their first time having an MRI, and maybe it’s to find out whether or not they have cancer,” Osterburg said. “Or maybe that their cancer is gone, and they can ring the bell.”

And the DAISY lets her know she and the team of half a dozen nurses she works with are having a positive impact on patients and families.

“I know how big a deal it is to get a DAISY. And it makes me feel I’m in the right profession.”

MRI clinical manager Megan Luther said she nominated Osterburg because of her passion for nursing, patient advocacy and her drive to improve her skills.

“She is very positive, and she wants to improve the processes here at Riley for our patients and for the team,” Luther said. “I’m proud to lead Faith and provide her with support and resources needed to cope with the many situations nurses encounter on a daily basis.”

Osterburg, who often fills in as charge nurse on the MRI team, attended school at the University of Cincinnati, where she met her husband, Nicolas. When he got a job in Indianapolis, she knew there was only place she wanted to work – Riley Hospital.

Outside of their jobs, the couple enjoy playing pickleball, and Osterburg dotes on her two cats, often putting them on a leash and taking them for walks outside.

She also crochets and loves to sing.

“My grandma and I still sing together sometimes; we all used to sing with my grandpa, who passed away a while ago. He was why I went into nursing,” she said, explaining that he often talked about how amazing his nurses were when he was ill.

“He touched so many people that I wanted to help people like him,” she said. “This award means so much to me. His memory always pushes me to help others and be my best self.”

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

The first time Riley Children’s Health schoolteacher Lindsay DeWilde introduced herself to Payton Himo, the reaction was priceless.

“She screamed out of pure joy and said, ‘School! I love school!’

“I knew at that moment that we would become great friends,” DeWilde said.

That was in 2019, when Payton was in first grade, and DeWilde would go on to work with the little girl off and on for the next five years as Payton spent more and more time in the hospital struggling with a weak heart.

Born with hypoplastic right heart syndrome (often referred to as half a heart), tricuspid atresia and transposition of the great arteries, she was tiny in stature but big in personality, endearing her to everyone she met.

On Sept. 30, 2024, 12-year-old Payton passed away at Riley Hospital for Children, seven months into her most recent admission. She spent more time in the hospital than at home in the past few years, as her heart continued to fail, and other complications prevented her from being listed for transplant.

“I will miss walking past her room and hearing, ‘Hi, Miss Lindsay!’ no matter how yucky she felt that day,” DeWilde said. “She was such a special girl, and she brought joy to anyone who met her. I am so grateful that I was able to be part of her story, and I will remember her always.”

So many people were part of Payton’s story, and that’s because she drew people in wherever she went. Her joy, her laughter, her bravery and her irrepressible spirit are what those same people remember now, even as they struggle to imagine a world without her in it.

Kim Ziegler, child life specialist and Child Life Zone coordinator, has been at Riley for nearly eight years and first got to know Payton over the phone when the then-4-year-old would call in to Riley’s “Surprise Eggs” Friday game show on CCTV.

“I kept hearing this little voice who would call in all the time and say, ‘It’s Payton!’ Ziegler recalled. “But I didn’t get to put the face to the name for a while.”

Payton, who will go down in history as the “Surprise Eggs” and Bingo queen at Riley, loved games. She especially loved winning at games, as anyone who ever played with her can attest. But she always did it with a smile.

“Every time I went to her room, she was like, ‘Can you stay and play?’ She and her mom taught me multiple card games,” Ziegler said. “She was always playing a game or doing a craft.”

Or building complex LEGO creations, many of which were on display during her funeral service last week.

Ziegler has some of the crafts that Payton made for her in her office, including a “Brave” bracelet and a heart mobile with some of her drawings.

“She will always be close to my heart. Just a little ray of sunshine.”

The light that Payton brought to Riley, to her family and to all in her orbit was all the more stunning because of the dark times that she faced, enduring eight open-heart surgeries and too many tests and procedures to count.

“Riley did a phenomenal job trying to help her,” said Matilda Perez-Himo, Payton’s mom and fiercest advocate. “Dr. (Mark) Turrentine and Dr. (Robert) Darragh were hopeful to get her on the transplant list, but Payton never got the chance.”

More than anything, she wanted to be back home in Portage, Indiana, her mom said. She spent many holidays and birthdays in the hospital, most recently taking on the role of princess for a day while celebrating her 12^th birthday in May.

“She was truly a blessing,” Perez-Himo said of her only child. “She was the brightest light. She was strong, she was brave, she was beautiful, she was generous.”

Payton was showered with gifts over the years, but she loved to share those gifts with her friends on the Heart Center at Riley.

“For her birthday, she picked out gifts that were given to her and gave them to other patients,” her mom said. “I had a burst of happiness in my soul.”

The generosity of spirit that Payton exhibited was nurtured by her mom, who is beloved by the Heart Center team and others throughout the hospital.

“Payton and her mom will be missed so much,” said Julia Burgess, who cared for Payton as a nurse on the Heart Center for many years and was able to experience the solar eclipse with her in July. “They brought so much joy and fun to the Heart Center, even during COVID.”

Burgess described Payton as a “warrior,” but she said her little patient learned how to be strong from her mom.

“Matilda not only took care of Payton 24/7, she also cared for the nurses and other patients. She doesn’t even know the impact she’s leaving on all those families and the Heart Center,” Burgess said.

But the impact goes beyond those walls.

“From the red wagon people, to the greeting people, to the security guards, to the nurses, to the janitors, to the volunteers, there weren’t too many people who didn’t know us,” Perez-Himo said. “For years, I’ve been walking those halls. They were my family there.”

And like family, Perez-Himo shared her cooking and coffee and treats with everyone. She made a Puerto Rican-style chicken and rice dish and shared a meal with several of the adult heart patients who were on the unit last year. She made sure the nurses remembered to eat during their busy days, always offering a kind word and a smile, even on her hardest days.

“It gave me joy to be able to give to them,” Perez-Himo said. “They work so hard.”

She laughs when she remembers the time she and Payton made stuffed peppers with therapeutic recreation specialist Mary Myers for the heart team.

“The unit smelled for two days. But from the child life specialists to all the therapists and nurses, anything Payton wanted to do to have a piece of home, they helped,” she said.

Payton was the first patient Myers worked with off orientation when the therapist joined Riley in 2020, and it took only a second for the little girl to capture her heart, she said.

“She had a smile that would light up the room, the most expressive eyes I’ve ever seen, and a laugh … her laugh would get us going and bring so much joy to the situation,” Myers said. “Her heart was filled with love, and her trust and faith in God shined through her. She struggled every single day, but she never gave up.”

She didn’t give up on herself or on those around her, Burgess said, recalling how Payton understood her body well enough to know why she needed treatments that sometimes left her feeling bad.

“She was one of the bravest patients I’ve ever had, and she was a great role model … encouraging other patients.”

For Perez-Himo, life outside Riley and without her daughter by her side is hard to imagine, but she is determined that Payton’s story doesn’t end here.

“I’m probably always going to be sad,” she said. “But I know her life served a purpose. She fought all the way to the end. She’s my true hero.”

Maybe that purpose was sharing her love and light with other people along the way, Myers said.

“It’s almost like she knew … that God sent her to be a light in the world, and oh, did she shine!”

Payton is also survived by her father, Shawn Himo, her grandmothers and several extended family members.

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

I-65 southbound will close between West Street and Alabama Street beginning at 9 pm on Tuesday, Oct. 15 through Thursday, Oct. 31.

The following entrance ramps will also be closed during this time:

• 38th Street eastbound to I-65 southbound
• Dr. Martin Luther King Jr. Street southbound to I-65 southbound
• 29th Street eastbound and 30th Street westbound to I-65 southbound
• 21st Street eastbound and westbound to I-65 southbound
• West Street northbound to I-65 southbound

The following exit ramps also will be inaccessible from I-65 southbound during this time:

• I-65 southbound to Meridian Street
• I-65 southbound to Michigan Street, Ohio Street, and Fletcher Avenue
• I-65 southbound to I-70 eastbound and westbound

All other exit ramps on I-65 southbound between 38th Street and West Street will remain open during this work. This work is weather dependent, and schedules are subject to change.

Due to these closures, additional traffic is expected near the new academic health center construction site and surrounding area. Please follow all directional signage and beware of flaggers and construction workers in the area.

Alternate routes:

To navigate these closures, see suggested alternate routes below:

• I-65 southbound to I-465 southbound/eastbound on the west side
• I-65 southbound to I-865 eastbound to I-465 eastbound/southbound on the east side
• West Street to I-70
• I-65 southbound to downtown Indianapolis should exit at or before West Street. Traffic will be required to exit at West Street.

At Riley Children’s Health, we’re here to answer your questions and provide support for your child’s condition. Read on to learn about scoliosis and its impact on the body, with expertise provided by Riley pediatric orthopedic surgeon, Daniel F. Drake, MD.

Defining scoliosis and its anatomy

What is scoliosis?

Scoliosis is an orthopedic condition where the spine has an abnormal curve. The curvature will continue to curve in different directions as children grow, but sometimes this is present at birth. This condition can disrupt the body's natural symmetry and alignment, causing postural changes, and sometimes pain and complications if severe.

The three types of scoliosis include idiopathic scoliosis (adolescent idiopathic scoliosis is the most common form), congenital scoliosis (present at birth) and neuromuscular scoliosis (caused by preexisting conditions like spina bifida, muscular dystrophy or cerebral palsy).

What is the anatomy of the spine?

Scoliosis affects the spine, or backbone, which is a structure that supports your body from your neck to your lower back. A healthy spine has natural curves that make an “S” shape from front-to-back and is divided into three parts–cervical, thoracic, and lumbar.

There are 33 vertebrae (or small bones) that stack to form the spine. When a spine has scoliosis, the bones in the spine begin to form in different directions, potentially leading to a range of physical, as well as emotional, complications.

Understanding the physical implications

What skeletal deformities can occur?

Scoliosis causes visible, skeletal deformities such as:

• Head not centered over rest of body
• Uneven slanting of the shoulders
• Single shoulder blade sticking out more prominently than the other
• Rib cage distortion
• Torso leaning to one direction
• Unbalanced hip alignment
• Leg length discrepancy

Can scoliosis cause muscular imbalance?

When diagnosed with scoliosis, it can cause the muscles surrounding the spine to become weaker than others. Specifically, your child may experience:

• Compensation patterns: This forms when muscles are unable to properly move a joint, limiting range of motion. Compensation patterns lead to muscle pain and discomfort, making daily activities challenging.
• Muscle strain and fatigue: Muscles on one side of the spine may become strained or fatigued because they must work harder to compensate for the curvature.

Can scoliosis cause difficulty breathing?

Severe scoliosis can largely impact the lungs by reducing the space available to expand. When there is no room to expand the lungs, this can lead to shortness of breath, especially during physical activity.

Can scoliosis cause heart problems?

Scoliosis can cause heart problems if severe. Because scoliosis restricts the rib cage, this can leave pressure on the heart, resulting in reduced blood flow to the heart and irregular heartbeat. In more severe cases, the disruption of the rib cage may cause heart failure or pulmonary hypertension.

Can scoliosis cause hip pain?

Scoliosis can cause hip pain due to the uneven distribution of weight in the hips. When the spine curves abnormally, the pelvis is tilted, leading to discomfort and pain in the hips.

How does scoliosis affect the digestive systems?

Similar to heart and lung complications, severe scoliosis can disrupt feeding intolerance and digestion. It can be beneficial for some patients with scoliosis to have a feeding tube to help with nutrition.

Seeking proper treatment and support

What are the available treatment options?

Treatment depends on the severity of the curvature. For mild scoliosis cases (10-25 degrees), frequent observation and monitoring may be the only treatment needed.

For moderate cases (25-45 degrees), physical therapy, bracing or casting are other treatment options to keep the spine aligned and prevent progression. In more severe instances, surgical treatment may be required. The three common surgeries performed are spinal fusion surgery (spine is fused together), growing rod surgery (rods are placed in the spine with the ability to lengthen as the spine grows) and non-fusion surgery (places screws in the spine).

How can you help your child with scoliosis?

Helping your child cope with scoliosis is important to navigating the care journey, and there are numerous resources to support you, such as:

• Join support groups, which provide a safe space for families to seek advice and connect with others facing similar challenges.
• Encourage family involvement, as having that support will help your child feel confident and safe.
• Your child with scoliosis will likely face body image concerns and emotional distress, in addition to the physical challenges. Consider mental health support to raise your child’s morale and behavioral wellbeing.

To find additional resources, visit SRS.org or curvygirlsscoliosis.com.

While scoliosis impacts everyday life and can affect many parts of the body, our team of orthopedic specialists are here to support in every way. Remember, seeking early intervention can make a big difference, and taking appropriate action now can help your child live a normal, happy life.

If you suspect your child has scoliosis, call 317.948.2550 to schedule an appointment with Riley Children's Orthopedics. A physician referral is not required. To learn more about our pediatric spine care, read this Q&A with one of our pediatric spine surgeons.

Clee Oliver is a 70-year-old man from Kokomo who wanted to go to a birthday party this week. Not just any birthday party, but a party celebrating the 100^th anniversary of Riley Hospital for Children.

That’s because Oliver is a Riley kid himself.

In 1954, he was bundled into his family’s 1952 Plymouth as an infant and driven by his dad to Indianapolis for treatment of a serious spinal condition at Riley Hospital.

On Monday, he rode his motorcycle to Riley to be among the hundreds of former and current patients, team members, hospital leaders and government officials to celebrate a century of pediatric care at the hospital named in honor of Hoosier poet James Whitcomb Riley.

Oliver still has a soft spot in his spine where doctors treated him for myelomeningocele, but he also has a soft spot for Riley in his heart.

“I’m standing here today talking to you because of Riley Hospital,” he said.

Anna Lee Magee’s ties to Riley Hospital go back even further. In fact, she is the oldest living Riley patient. Magee will celebrate her 90^th birthday Friday. As a 10-year-old back in 1944, she was stricken with polio and taken to Riley for what turned out to be an eight-month stay.

The hospital was packed with polio patients as desperate parents sought care for their children who suffered paralysis from the once-dreaded disease before a vaccine became available in the 1950s.

Coming to the birthday party for the hospital on Oct. 7, which also marked the 175^th birthday of its namesake, was a thrill, she said.

“It’s the greatest thing, it’s wonderful,” Magee said just before being introduced to the crowd in the lobby of the hospital’s Simon Family Tower.

The past 80 years have softened her memories of her lengthy stay at Riley.

“We had everything,” she said. “We had school and games. We would wait for (our nurse) to go off-duty so we could play our tricks. We were 10-year-old kids.”

Though doctors warned her parents she likely would never walk again, she underwent rigorous treatment and therapy, which her mother continued when her daughter returned home in July of 1945.

“My mother helped me with all the exercises, and I was able to walk with braces and crutches.”

Magee, who now lives in a Brownsburg assisted-living facility, went back to school, learned to drive and worked for the Indiana State Board of Health for 32 years.

For Jasmine Finnell, Riley’s mission is close to her heart because she works for the Riley Children’s Foundation. But she recently became a mom of twins who now receive care at Riley.

“I always knew how important the mission was, but now with my own NICU story … it has opened my eyes to how important this hospital is.”

Ashley Higgins was only 3 when she became a Riley patient, but now she raises money for RCF as a student at Indiana University Indianapolis, where she is studying to be a physician assistant.

“I’ve gotten to see so many miracles that Riley is able to do,” she said. “Riley has had such a big impact on my life, and it’s the reason I chose to go into the medical field.”

For every story captured here, there were hundreds more among the guests at Monday’s party and tens of thousands more around the city and state.

“Riley started as one hospital. Today, we are Indiana’s most comprehensive children’s healthcare system … with highly skilled care in 19 communities across Indiana,” Dr. Elaine Cox, chief physician executive, told the crowd.

Commenting on the hospital’s century of service, IU Health President and CEO Dennis Murphy said, “I don’t think there is a single Hoosier family that has not been touched by Riley,” whether as a patient, family member, friend or neighbor.

“It is a leading expert in children’s health with an unwavering commitment to improve the outcomes and care of children in this state,” he added. “There is care that happens here at Riley that doesn’t happen anywhere else in Indiana.”

Stacia and Trae McBride can attest to that. The Indianapolis couple and their 2-year-old son, Major, took to the stage to give a shout out to all of the teams at Riley who have had a hand in Major’s care ever since he was born more than three months prematurely.

“Being able to speak here and express our gratitude at such a historic event is a blessing,” Stacia McBride said. “I like to say we have an MP behind our name for medical parents. We want to thank everyone … you saved his life.”

Among the dignitaries present for the centennial celebration were Indianapolis Mayor Joe Hogsett, who presented a proclamation from the city declaring Oct. 7, 2024, Riley Children’s Health Day.

“Having such a renowned center for pediatric care right in our own backyard is an invaluable asset to this city and its residents,” the mayor said.

Also on hand were Indiana legislators Dr. Brad Barrett, Ed Charbonneau and Andrea Hunley, who read a joint resolution from the General Assembly recognizing Riley’s 100-year milestone.

They and other special guests were treated to small-scale replicas of the historic Riley red wagon, along with copies of “Cherishing Each Child,” a history of Riley Hospital just published by Indiana University Press and available in hospital gift shops and at several online retailers.

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

Riley Grief Services opened its doors to supporters past and present during a special welcome Tuesday night.

Everyone in the room carried their own stories of grief, most hidden from view, but some more public.

Whether it was the young mom whose baby girl died last year, the parents whose 3-year-old son died of leukemia a decade ago, or the program speaker whose child passed more than 30 years ago – grief unites them.

So does their mission to advance the work of Riley Grief Services, which is celebrating its 15^th year with the dedication of an expanded, remodeled space for families to find comfort and support.

“I want to thank the families we serve. They have trusted us when their world has been shattered,” said program manager Elizabeth Boring in her remarks to the crowd.

“Often, people assume I have the saddest job in the world, but the truth is, I get to witness profound love every single day,” she added. “Love is joyful and painful and full of moments that take our breath away, but most of all, love is eternal and transcends time and place. It is the honor of a lifetime to walk alongside each of you.”

Riley Grief Services began in 2009 as Hope in Healing, thanks in large part to the actions and advocacy of the neonatology team at Riley, especially Dr. Jayme Allen, who learned from her earliest days at Riley 23 years ago that bereaved families need and deserve extra support.

“To all the bereaved families here tonight, you put real faces on our mission,” she said, adding that Dr. Jim Lemons (who was on hand, as were retired neonatologists Drs. David Boyle, William Engle and Richard Schreiner) taught her something she would never forget: Once a Riley family, always a Riley family.

“I was part of a team in the NICU that wrapped their arms around families in every way possible for days, or weeks or months, and I was proud,” Dr. Allen said.

But after supporting families through loss, she worried who would help them navigate the days and months ahead.

“In 2009, thanks to the leadership of Dr. Rich Schreiner, Department of Pediatrics chairman at the time, and the generosity of Women for Riley, we made a commitment to grieving families, and at the core of that commitment was our mission – to provide free, comprehensive, individualized grief support to families grieving the loss of a child,” Dr. Allen said.

Since that time, the program, which has been supported by Riley and IU Health leadership, Women for Riley, Riley Children’s Foundation and countless private donors, has helped more than 3,000 Riley families. It is recognized nationally for its pre-eminent standard of care in the area of perinatal and pediatric grief services.

Lee Neff of Women for Riley was among the program’s earliest and most ardent champions, Boring said. Neff and her husband, Matt, lost a child 30-plus years ago.

“Their support has been instrumental in the formation and continuation of grief support at Riley,” Boring said.

Riley Grief Services, located at 6640 Intech Blvd. on the northwest side of Indianapolis, offers individual counseling sessions, support groups, retreats, art therapy and special events throughout the year. Since the pandemic, many of the programs have been made available virtually, which means more people throughout the state can participate.

Shayla and Brandon Roush and their family are among those people who have benefited from the Riley Children’s Health grief support team, and they are giving back through a foundation named for their daughter Flynn, who passed away in 2023 at IU Health North Hospital.

Among the contributions on display Tuesday night was a large bookcase handcrafted by Shayla Roush’s dad, Dave Hinchman, housing dozens of books on grief for kids and adults. In an adjacent art therapy room, the Roushes’ daughter Olivia was making butterflies with her uncle, Grady Hinchman.

“It’s awesome that we can have all of these resources available for grieving families, not just moms and dads, but kids,” said Roush, whose daughter continues art therapy sessions remotely.

“It’s nice to have a space where I can talk about Flynn and know I’m not going to get judgment,” she said, adding that program coordinator Cassie Dobbs helped guide her through the feelings that come with grief.

“I honestly don’t know what I would have done if I hadn’t found it.”

For Dobbs, who has been with the program for several years, the dedication was a chance to demonstrate how important grief services are to Riley families.

“Sometimes we can be kind of a hidden program at Riley, so it’s nice to be seen and have our families be seen and share how important it is for us to be able to provide all kinds of services in this space,” she said.

Molly Belling, who founded Peyton’s Promise with her husband in honor of their late son Peyton, presented a large donation to Riley Grief Services after the open house ended and recalled how crucial the program was to her family’s healing.

“From our first interaction with this amazing team, we knew that they were special. We knew that they were uniquely equipped to help people facing their worst nightmare in a way others couldn’t,” she said. “It’s an honor to be a small part of the expansion of Riley Grief Services.”

Eric and Molly Belling named their youngest daughter Riley in a nod to their love for the hospital.

Click here to learn more about Riley Grief Services.