By Jessica Pavlock, EP

Sienna was just 3 years old when she came to Intermountain Primary Children’s Hospital in Salt Lake City, Utah; but life had been anything but simple during her short time on this earth. Born with a congenital heart defect called hypoplastic left heart syndrome (HLHS), she had already undergone two open-heart surgeries. Despite these interventions, she developed severe heart failure, which eventually led to her needing a ventricular assist device (VAD) as a bridge to heart transplant. This life-saving device, a mechanical pump that helps the heart circulate blood, was the intervention she desperately needed while waiting for a heart. 

Prior to her VAD, Sienna was unable to leave the ICU or accept any nutrition, and she was too weak to move around her room. Her VAD operation, though, went smoothly and she eventually was able to transfer out of the ICU to the regular cardiac unit. Living in the hospital amid the constant hums and beeps of her medical equipment became part of her daily reality. In the beginning, every day was a battle: simple activities like walking across the room left Sienna exhausted and breathless. Most days were spent sitting at a table or laying down in bed, too tired to play or explore the world (hospital) around her. An active playtime felt like an impossible dream. 

Game Changer

Everything changed when Sienna was introduced to pediatric cardiac rehabilitation. While this type of intervention is standard of care for adults with heart problems, it is relatively new for children, especially young children with severe heart failure. Sienna was one of two inpatients to be part of the pilot program at Intermountain Primary Children’s Hospital and, at the age of 3 with a single ventricle, one of the first kids to receive a cardiac rehab program while on a VAD. Our team’s focus was to increase exercise tolerance and strength using objective measurements to attain those goals, which was complementary to her other recovery services such as physical and occupational therapy.

The first and most important step in implementing cardiac rehab into Sienna’s routine was gaining her trust. At such a young age, Sienna struggled to understand that pushing her limits was necessary after being sick and sedentary for so long. On top of that, she had to work with people she didn’t know. Creating a safe and supportive space was crucial to ease her fears and help her feel comfortable enough to participate. Her fears and hesitancies were significant and understandable hurdles the team had to overcome, and at times it wasn’t easy. There were days when frustration and fatigue threatened to take over, but Sienna and the team never gave up.

At first, the exercises were small and gentle — learning to walk a little farther each time until eventually she was running the halls of the hospital. Week by week, strength returned. The once-sedentary child who rarely smiled was soon laughing and singing at the top of her lungs while climbing the stairs, throwing heavy rocks into the pond, running short distances, and even pushing a grocery cart (full of weights to build both strength and endurance). Activities that once seemed impossible became sources of joy. Cardiac rehab wasn’t just about building endurance and strength — it was about rediscovering the joy of being a child.

Today, at 4 years old, Sienna is unrecognizable from the sick, fatigued toddler who was admitted to the hospital, and is now bursting with energy; in fact; she’s the boss of the cardiac rehab sessions.Cardiac rehab has uniquely helped to prepare her for a heart transplant. Although the journey has been incredible, it is not quite over yet — Sienna has been waiting for a heart for almost 2 years. But one thing is certain: this little queen has a bright future full of play, laughter, and endless possibilities.

Jessica Pavlock is an exercise physiologist and cardiac rehab lead at Primary Children's Hospital in Salt Lake City. She uses her combined love of exercise and science to help young patients stay active, strong, and ready for the next steps in their heart-health journey.