As she waits for a heart transplant, 7-year-old makes hospital her home

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learn more about organ donation here.

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