Alejandra, 16, spent her childhood wishing for what she considered a “normal life.” She wanted to play soccer. Sleep without a breathing machine. Take deep breaths.
Maz Zisan, 18, went from regular mixed martial arts workouts to being exhausted by a walk around the block, his overworked heart straining at the effort. His dream of majoring in mechanical engineering and getting his pilot’s license seemed unattainable.
For both Maz and Alejandra, planning for the future moved from dream to reality in 2021, when they became the first pediatric heart and lung transplant recipients, respectively, at Hassenfeld Children’s Hospital at NYU Langone.
Alejandra received a new pair of lungs last May to replace the ones ravaged by cystic fibrosis, a genetic disease that caused deadly damage to her lungs. In August, Maz received a new heart to treat hypertrophic cardiomyopathy (HCM), a congenital condition that causes the wall between the heart’s chambers to thicken, restricting blood flow. HCM is a leading cause of sudden cardiac death in young people.
Before their transplants, neither teen dared to plan too far into the future. But now they’re dreaming big, unconstrained by acute illness, and savoring life’s simple joys.
“The second I woke up from surgery I really felt something was different,” says Alejandra, who lives in Westchester County. “It was life changing. Breathing is just—it’s awesome. I used to struggle to take tiny, tiny breaths. Now, I take deep, deep breaths, and it’s just incredible.”
Maz, too, is excited to regain health and momentum. A martial arts enthusiast, he likens his new heart, strong enough to power his active lifestyle, to a performance engine in a Tesla. He works out weekly, rides his scooter to college classes, and works part-time as a pharmacy technician. “Before my transplant, a walk around the block would tire me out. I struggled with depression. I wasn’t sure that I would go to college or even be able to work a regular job,” says Maz, a Brooklyn native. “But I’ve recovered quickly, and I’m back at the gym practicing mixed martial arts with my younger brother. And I am planning to become a pilot.”
The pediatric heart and lung transplant programs are both part of the NYU Langone Transplant Institute, a recognized leader in transplant surgery and research. The Pediatric Heart Failure and Transplant Program is led by Surgical Director T.K. Susheel Kumar, MD, associate professor in the Department of Cardiothoracic Surgery at NYU Grossman School of Medicine, and Medical Director Rakesh Singh, MD, associate professor in the Department of Pediatrics at NYU Grossman School of Medicine. Dr. Kumar, who has performed dozens of pediatric heart transplants, is renowned for his expertise in treating complex congenital heart conditions. Before joining NYU Langone, Dr. Singh supervised care for more than 150 heart transplant recipients.
“The second I woke up from surgery I really felt something was different. It was life changing. Breathing is just—it’s awesome. I used to struggle to take tiny, tiny breaths. Now, I take deep, deep breaths, and it’s just incredible.”—Alejandra, 16, the first pediatric lung transplant recipient at Hassenfeld Children’s Hospital at NYU Langone
Their patients receive the latest available heart failure treatments before transplant, says Dr. Singh, and the program collaborates with transplant centers across the country to review data and develop new protocols to improve patient care. In addition, as part of the Transplant Institute, the Pediatric Heart Failure and Transplant Program benefits from the institute’s innovative research and renowned expertise, explains Dr. Singh.
NYU Langone’s heart transplant program has been ranked the top program in the Northeast by the Scientific Registry for Transplant Recipients (SRTR), with the shortest waitlist times and highest one-year survival among high-volume centers in the region. “Our colleagues who made that happen are involved in the pediatric program, too,” notes Dr. Singh. “That allows us to think outside the box and address long-standing hurdles in pediatric transplants, such as increasing the donor pool or providing access to children who might not otherwise qualify for a transplant due to the severity of their illness.”
Being part of a larger adult program bolsters the pediatric lung transplant team as well, notes pediatric pulmonologist Eleanor Muise, MD, assistant professor in the Department of Pediatrics at NYU Grossman School of Medicine, who cares for children before and after lung transplant surgery. She is part of a team that includes Luis F. Angel, MD, medical director of lung transplantation, and Stephanie H. Chang, MD, surgical director of the program. NYU Langone’s lung transplant program is one of the top programs in the country, based on a combination of high one-year survival rates and speed to transplant as reported by SRTR.
With advances in the treatment of cystic fibrosis, the need for lung transplants in children is less than it used to be, notes Dr. Muise. But for youths like Alejandra who desperately need this treatment, there is a tremendous benefit to being treated by doctors at a combined pediatric and adult program. “At NYU Langone, the surgical experience of the adult program provides a huge benefit for the children we treat,” Dr. Muise says. Children who receive transplants at NYU Langone become inpatients at Hassenfeld Children’s Hospital—34th Street, which features all single-bedded rooms with sleeping space for a parent or caregiver.
“NYU Langone was the best choice for my transplant,” says Alejandra. “The attention and care are so wonderful. I’ve never experienced anything like that before, and there are no words to explain how really thankful I am for my doctors here.” Pediatric patients also benefit from Sala Institute for Child and Family Centered Care, which provides social support and addresses children’s emotional wellbeing.
“The transplant relationship is very special. My patients know I am their person. I know what they like to eat, when they’re supposed to go to bed, because I want them to understand how important those things are to their health,” says Dr. Muise, who forms long-term relationships with her patients. “They make it so easy to love them, and I feel so happy when I see them feeling better.”