SALT LAKE CITY — Sienna, a spirited 4-year-old girl, is facing her third birthday at Primary Children's Hospital while preparing for a heart transplant due to hypoplastic left heart syndrome. Since early 2023, she has been bravely enduring her hospital stay, with family members visiting daily from their home, located 45 minutes away — more challenging during rush hour.

As she approaches this emotional milestone, her mother, Francesca Barton, expresses a bittersweet hope: "You hope that you know, that's not their life story."

Innovatively, the hospital has initiated a new cardiac rehabilitation program specifically designed for young patients like Sienna, which is having an uplifting impact on her well-being during this challenging time.

Bringing Joy to Recovery

Jessica Pavlock, the exercise physiologist leading the program, recalls meeting Sienna when she was less active, often just watching TV. Within months, Sienna's condition has transformed remarkably — she now looks forward to exercises with genuine excitement, even participating in singing and dance parties with the medical staff. Pavlock shared, “She doesn’t even realize she’s working out at this point,” noting Sienna's engagement and joy during the sessions.

To create a fun environment, the team incorporates music, allowing Sienna to dance and sing while she exercises. This brings an enjoyable twist to her rehabilitation and keeps her active throughout the day, much like any other healthy child.

Dr. Dan Ziebell, the pediatric cardiologist overseeing the rehab program, explained that this medically supervised initiative aims to build strength and endurance in heart patients, ensuring they are well-prepared for eventual transplants. Sienna participates in structured exercise three times a week, which is crucial for maintaining her strength during her prolonged hospital stay.

A Groundbreaking Program for Young Patients

Ziebell's program consists of 36 sessions over three months, allowing patients to graduate with newfound confidence to exercise independently. What sets this program apart is its focus on children since cardiac rehabilitation is typically centered around adult patients. Primary Children's Hospital is one of the first to adapt these methods specifically for younger demographics. Currently, around 15 kids are involved, with telemedicine options available for those unable to travel to Utah.

The data collected from both hospital assessments and parent feedback indicates significant improvements in the children's physical and mental health, helping them embrace exercise without fear. Ziebell thoughtfully remarked, “If we’re going to promote lifelong health, we need to get these kids active very young.”

A Courageous Journey Ahead

For Sienna's family, the hope of reuniting full-time hinges on finding a suitable heart for her transplant, eliminating the need for the artificial heart she currently relies on. Francesca shares that while Sienna enjoys her time at the hospital, the interaction with other children is limited for health reasons.

To encourage her daughter’s outdoor interests, the team has creatively integrated activities such as throwing rocks into a pond, introducing Sienna to nature and outdoor fun — even building a tiny habitat for a ladybug they discovered together.

As Sienna continues her rehabilitation, her mother feels encouraged by her progress: "The strength is already there, and the fight is already in her. All she needs is that new heart, and she'll take off."

A particularly pressing challenge arises from Sienna’s specific blood type and geographical location, placing her among the few children in the U.S. waiting for a heart at a high level of need. Francesca passionately advocates for organ donation awareness, encouraging families to discuss their wishes regarding organ donation to help others facing similar challenges, affirming, “It truly is such an incredible way to remember your loved ones and allow them to live on."

Together, Sienna’s journey highlights resilience and hope in the face of adversity — and serves as a powerful reminder of the critical importance of organ donation.