Transplants give children the confidence to dream big
A16-year-old lejandra spent her childhood wishing for what she considered a “normal life”. She wanted to play football. Sleep without breathing apparatus. Take deep breaths.
Maz Zisan, 18, went from regular mixed martial arts training sessions to being exhausted from a walk around the block, his overworked heart straining from the exertion. His dream of majoring in mechanical engineering and earning his pilot’s license seemed unachievable.
For Maz and Alejandra, planning for the future went from dream to reality in 2021, when they became the first pediatric heart and lung transplant recipients, respectively, at NYU Langone’s Hassenfeld Children’s Hospital.
Alejandra received a new pair of lungs last May to replace those ravaged by cystic fibrosis, a genetic disease that has caused fatal damage to her lungs. In August, Maz received a new heart to treat hypertrophic cardiomyopathy (HCM), a congenital condition that causes the lining between heart chambers to thicken, limiting blood flow. HCM is one of the leading causes of sudden cardiac death in young people.
Before their transplants, neither teen dared plan too far into the future. But now they dream big, unconstrained by acute illness, and savor the simple joys of life.
“The second I woke up after surgery, I really felt something was different,” says Alejandra, who lives in Westchester County. “It was life changing. Breathing, it’s just… it’s awesome. I used to struggle to take tiny tiny breaths. Now I take deep deep breaths, and it’s just amazing.
Maz, too, is thrilled to regain his health and momentum. A martial arts enthusiast, he compares his new heart, strong enough to power his active lifestyle, to a performance engine in a Tesla. He trains weekly, rides a scooter to college classes, and works part-time as a pharmacy technician. “Before my transplant, a walk around the block made me tired. I struggled with depression. I wasn’t sure I would go to college or even be able to hold down a regular job,” says Brooklyn native Maz. “But I recovered quickly and I’m back in the gym practicing mixed martial arts with my younger brother. And I plan to become a pilot.
Both the pediatric heart and lung transplant programs are 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 TK 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 from the 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 disease. Prior to joining NYU Langone, Dr. Singh oversaw the care of over 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’m breathing deeply, deeply, and it’s just amazing.”—Alejandra, 16, the first pediatric lung transplant recipient at NYU Langone’s Hassenfeld Children’s Hospital
Their patients receive the latest available treatments for heart failure before transplant, says Dr. Singh, and the program works with transplant centers across the country to review data and develop new protocols to improve patient care. Additionally, as part of the Transplant Institute, the Pediatric Heart Failure and Transplant Program benefits from the institute’s innovative research and recognized expertise, says Dr. Singh.
NYU Langone’s heart transplant program has been ranked the top program in the Northeast by the Scientific Registry of Transplant Recipients (SRTR), with the shortest wait lists and highest one-year survival among high-volume centers in the region. “Our colleagues who made this possible are also involved in the pediatric program,” notes Dr. Singh. “It allows us to think outside the box and overcome long-standing obstacles in pediatric transplants, such as increasing the number of donors or accessing children who might otherwise not be eligible for a transplant due to the severity of their disease.
Being part of a larger adult program also strengthens the pediatric lung transplant team, 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 best programs in the nation, based on a combination of high one-year survival rates and speed of transplantation, as indicated by the SRTR.
With advances in the treatment of cystic fibrosis, the need for lung transplants in children is less than before, notes Dr. Muise. But for young people like Alejandra who desperately need this treatment, there is a huge benefit to being treated by doctors in a combined pediatric and adult program. “At NYU Langone, the surgical experience in the adult program provides a tremendous benefit to the children we treat,” says Dr. Muise. Children who receive transplants at NYU Langone become inpatients at Hassenfeld Children’s Hospital on 34th Street, all of which are single-bed rooms with sleeping space for a parent or caregiver.
“NYU Langone was the best choice for my transplant,” says Alejandra. “The attention and care is so wonderful. I have never experienced anything like this before, and there are no words to explain how truly grateful I am to my doctors here. Pediatric patients also benefit of the Sala Institute for Child and Family Centered Care, which provides social support and cares for the emotional well-being of children.
“The transplant relationship is very special. My patients know that 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 has a long-term relationship with his patients. “They make it so easy to love them, and I feel so happy when I see them feeling better.”