4-year-old prepares for heart transplant, has fun in new cardiac rehab program

SALT LAKE CITY — One young girl is about to spend her third consecutive birthday at Primary Children's Hospital. Sienna, 4, was born with hypoplastic left heart syndrome and needs an artificial heart and a medical team to keep her alive until a heart transplant is available.

Sienna is the youngest of three children in her family and she has been in the hospital since early 2023. Her mom said they live 45 minutes away from the hospital — when traffic is good. Family comes to stay with the girl every day — either Sienna's mom, dad or grandparents. Sienna's mom said her upcoming birthday is a difficult milestone.

"You hope that you know, that's not their life story," Francesca Barton said.

Despite the challenges of her long stay, a new cardiac rehabilitation program introduced at Primary Children's Hospital is significantly improving her life right now.

Bringing the pizzazz

Jessica Pavlock, an exercise physiologist and cardiac rehab lead, said she met Sienna about six months after the long hospital stay began. The girl was sitting, watching TV and not moving much.

"Active play wasn't really part of Sienna's day," Pavlock said.

Slowly, she said, the girl started walking to the end of the hallway, pushing weights and picking things up off the floor. Now, Sienna looks forward to exercises and always wants to go for a run and sing — Pavlock said the nurses have to work to keep up with her.

"She doesn't even realize she's working out at this point," she said.

They bring along a speaker to play music and make it fun — individualizing treatment to each patients' interests.

"We definitely bring the pizzazz," Pavlock said.

If you walk past Sienna's room she is having a dance party and singing. Pavlock said she is now active for the majority of each day, as a healthy child would be.

Dr. Dan Ziebell, a pediatric cardiologist and director of the cardiac rehab program, said cardiac rehab is a medically supervised program to build physical strength in heart patients. For patients like Sienna, he said it is helping prepare her and build strength to help her recover from her eventual heart transplant. Ziebell said the exercise, three times a week, is keeping her from becoming weak due to the hospital stay.

"Our program is very intentional about getting her very active, and as active as she can," he said.

A unique program

Ziebell said the program helps outpatient children learn their limits and can lead to them participating in physical education classes or sports, even amid their various ailments. The program consists of 36 sessions in three months and then patients graduate with the confidence and training to exercise on their own.

This program is unique because it is geared toward children, he said, adding that cardiac rehabilitation is mainstream for adult heart patients. Primary Children's is, however, one of the first facilities to adapt the program for young kids.

Ziebell said about 15 patients are currently involved in the program, in addition to others who have graduated over the last few years. The program is available at both Primary Children's locations in Utah and as a telemedicine program for children who can't easily travel to Utah or Salt Lake counties.

The regularly assisted exercise teaches kids how to exercise independently, and hospital data and parent feedback show the program is making a difference, Ziebell said. It lays a foundation for other comprehensive heart programs to grow, and eventually, this process will be the standard of care like it is for adults.

"They need to be kids, despite having a heart condition," he said. "If we're going to promote lifelong health we need to get these kids active very young."

Pavlock said taking Sienna into the hall requires a "whole squad." They need two nurses to carry the ventricular assistance device, or artificial heart, and her medications in an IV bag. Sienna was one of the first two patients to participate in the program, and they both started on the same day.

"It not only helps improve their physical health, but their mental health as well because they feel so strong after completing the program that they go out and they're able to do it. They're not scared to exercise anymore. … They're living their lives," she said.

Ready for a transplant

Barton wants her family to live together again, but that won't happen until her daughter gets a heart transplant — eliminating the need for an artificial heart — and goes through a recovery process.

She said Sienna is happy at the hospital but isn't able to interact with many other kids because of the need to keep all of the children there healthy.

To get her involved in exercise the team uses Taylor Swift, hanging a Bluetooth speaker on the IV pole, and takes her outside to throw rocks in the pond. Barton said they try to help her discover the outdoors, which is limited for Sienna because of the need for staff to help her move.

"One time we found a ladybug, and for months after, they would take her out there to the grassy area, and they would build a house for the ladybug," she said.

Barton said the therapy has strengthened her body and kept her from being sedentary.

"The strength is already there and the fight is already in there, the bite is in there — she's ready. The spiciness is there, and all you need is that new heart and the rest of the body will teach it how to go, teach it how to keep up," she said.

Because of Sienna's blood type, and how far Salt Lake City is from most of the large population centers she is one of only a few children in the U.S. who has waited for a heart for this long at the highest status of need.

Barton encouraged people who hear her daughter's story to talk about organ donation with their families now. She said making a decision now means one less decision for a family going through a hard time.

She advocated for signing up to be an organ donor in college because of a friend with a heart condition, and now she will always be an advocate.

"It truly is such an incredible way to remember your little one and remember your loved ones and allow them to live on," Barton said.

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