With Comprehensive Cardiology Care, Xavier Kicks Off a Bright Future

Everyone who knows Xavier, 9, describes him as magnetic, energetic and happy-go-lucky. So, when he became weak and withdrawn for nearly a week, his mom Ashley sought answers at their local emergency department.  

“The doctor listened to his heartbeat and said something was not right,” Ashley remembered.  

Further testing confirmed Xavier’s heart was in failure, and he was rushed to Lurie Children’s. Xavier has Duchenne muscular dystrophy (DMD), a disorder that causes progressive muscular weakness, first affecting the skeletal muscles and respiratory muscles, and subsequently affecting the heart, leading to heart failure. He is part of the 50 percent of boys with DMD who experience heart failure by age 15. 

Xavier was then admitted to Lurie Children’s Regenstein Cardiac Care Unit (CCU), a state-of-the-art unit devoted to the care of young patients with cardiac disease. Doctors said Xavier would need a heart transplant and that he would need to stay in the CCU to wait for his heart transplant. The CCU is staffed by pediatric cardiac intensivists who collaborate closely with the Heart Center's cardiologists, surgeons, neonatologists, anesthesiologists, advanced cardiac nurse practitioners and cardiac nurses.  

The team is also supported by behavioral health professionals, like Meredyth Evans, PhD, a medical psychologist. Dr. Evans works closely with CCU patients, parents and staff to ensure each child’s emotional and behavioral needs are tended to during their inpatient stays.  

“I really focused on supporting his coping and adjustment to the hospital,” Dr. Evans said. “A long hospital stay can be so hard for kids.”  

In their work together, Dr. Evans made a point to create joyful distractions for Xavier. One day during a visit with Dr. Evans, a palliative care physician walked by Xavier’s room wearing a snazzy pair of sneakers. Xavier, a diehard NBA fan, called out to compliment the shoes – and an idea was born.  

“I asked him, what if you wrote a letter to Nike and designed your own sneaker?”  

Encouraged by the idea, Xavier worked with a Lurie Children’s art therapist, Giuseppina Impellizzeri, to mock up the sneaker of his dreams. With fingers crossed, he and the team soon sent off the letter and design.   

While awaiting word from Nike, another gift arrived: a new heart for Xavier.  

“It was a happy, but sad moment,” Ashley said. “I was very emotional. It was just overwhelming; a lot to process.” 
 
Thanks to five months of preparation in the CCU with a multidisciplinary team, Xavier went into his heart transplant surgery strong in mind, body and spirit. Even his loving family felt cared for by the team: Child Life Specialists helped his siblings cope with their own anxiety and confusion around the procedure.  

Xavier makes history 

The CCU has performed over 400 heart transplants – but Xavier was the very first patient with muscular dystrophy to undergo the strenuous procedure.  

“For kids like Xavier who have preserved respiratory muscle function and have less advanced skeletal muscle weakness, heart transplantation can be considered,” said Dr. Katheryn Gambetta, attending physician in cardiology at Lurie Children’s. “Our center carefully evaluated Xavier and involved a multidisciplinary team comprised of pulmonary medicine, neuromuscular medicine, cardiac surgery, physical therapy, and advanced heart failure cardiologists. Together, we determined that our patient would benefit from heart transplant and that his neuromuscular and respiratory muscles were strong enough to withstand a heart transplant.”

“Xavier is a true warrior demonstrating that heart transplantation can be performed successfully in DMD,” Dr. Gambetta said. “He paves the way for other boys showing that heart transplantation should be considered in children with neuromuscular disorders.” 

‘He gave me hope’ 

After a strong recovery, Xavier’s family was eager to welcome him home. During one post-surgery visit to the hospital, he received a special surprise from Nike: not only did they design his dream sneakers, but they also gifted him five additional pairs.  

“His eyes got so big,” Dr. Evans said when the shoes were revealed. “He was so sweet and kept saying ‘thank you’ to our friends at Nike.”  

With a new heart and custom-made sneakers, Xavier reminds his family it’s important to stay patient and keep hope alive.  

“He did pretty well to be a kid and deal with that,” Ashley said. “He didn’t let anything stop him. He gave me hope.”

Learn more about our heart transplant program