Heart Transplant Program – One of the Country’s Busiest

from Practice Update, Winter 2004

Age distribution of pediatric heart recipients for
transplants performed between January 1982 and June
2002
Note: Data from the registry of the International Society
for Heart and Lung Transplantation: Sixth Official
Pediatric Report, 2003 Diagnosis in pediatric heart
transplant recipients (age < 1 year)

Only about eight percent of heart transplants performed worldwide are performed on patients under 18 years of age. A large percent of the patients are infants less than a year of age with lethal congenital heart disease.

The pediatric heart transplant program at The Children’s Hospital was established in 1990. Over the past fourteen years, Children’s has transplanted over 226 children, with an overall survival of 75%. First year graft and survival rates substantially exceed the national averages and the retransplant rate is one of the lowest in the country at almost a percent below the national average.

Operative survival is now above 94%. On average, children require less than one re-admission in the first year post-transplant and over 95% of the children have no activity limitations. The program maintains patients on a steroid-free regimen, allowing nearly normal growth. This program has served as a model for other programs around the country.

The transplant staff is involved in leading-edge research in chronic immunosuppression, particularly in the management of post-transplant coronary artery disease. Other research focuses on the management of the infant awaiting orthotopic cardiac transplantation; psychosocial effects of transplantation; non-invasive evaluation of coronary physiology; and innovative surgical approaches to minimize ischemic time and optimize late graft function. A Federally funded research effort focuses on transplant rejection and the promise of transplantation without the need for life-long immunosuppression.

A comprehensive approach to patient care allows for excellence in transplantation, as well as alternative therapies and surgical options. For example, with the arrival of François Lacour-Gayet, MD, one of the world’s most experienced surgeons in the Norwood procedure and biventricular repair, The Children’s Hospital is able to offer both transplantation for hypoplastic left heart syndrome and variants and, surgical palliation with the Norwood procedure and catheter interventions as alternatives. Diagnostic and therapeutic catheterization services are immediately available and consults with numerous subspecialties are available within minutes.

Finally, an extensive education and support program is coordinated by the transplant nursing staff. These nurses have long-term experience with young heart transplant patients, can answer families’ questions about what to expect following surgery and ongoing care, and know how to access a broad range of family support services. In addition, some of the most experienced physical, occupational,  nutrition and speech therapists are available to address developmental issues that may result following transplantation and hospital stays.

Note: Statistics for pediatric patients transplanted 7/99 to 6/01. Volume-wise, the pediatric cardiac transplant program is one of three largest programs in the country.