Advances in pediatric heart treatment are allowing more children to survive long enough to receive a transplant, but a critical shortage of donor hearts means too many are dying while waiting, experts warned today at the International Society for Heart and Lung Transplantation (ISHLT)’s 46th Annual Meeting and Academic Session.
Presentations by surgeons from the United States and Europe highlighted growing contradictions. Even though medical advances are saving more children, the supply of donor hearts is not keeping pace.
Costly delays in implementing the American Transplant Modernization Act
Dr. Kevin P. Daly, a pediatric cardiologist at Boston Children’s Hospital, said breaking a bottleneck in the U.S. Transplant Modernization Act would help send donor hearts to recipients. Implementation of the Modernization Act, delayed by federal contract delays, will allow the Commission to continue work on a proposed transition from a categorical system to a continuous distribution model that better prioritizes medical urgency and system efficiency. The new system adds allocation points for children and improves the pediatric urgency category, giving them higher priority.
“Allocation policies are important, but they cannot solve organ shortages,” said Dr. Daley, president of the Pediatric Heart Transplant Association.
More than 600 pediatric heart transplants are performed each year worldwide, but waiting list mortality remains high. In the United States, more than 1 in 6 children on waiting lists do not survive.
At the same time, advances such as ventricular assist devices are allowing critically ill children to live longer, sometimes by months or even years, while waiting for a transplant.
“That’s the paradox,” says Brigitte Stiller, MD, professor and head of pediatric cardiology at the Heart Center of the University of Freiburg in Germany. “We are saving children on the waiting list, but we can’t find enough donor hearts for them.”
Stiller argued that the field needs to rethink how donor hearts are selected and used.
“The shortage of pediatric heart transplants is not fate, it’s a problem we can redesign,” she says.
Experts urge greater use of donor hearts
One important change is moving beyond the concept of a “perfect” donor heart. As children become more stable on mechanical support, clinicians are often reluctant to accept anything other than the ideal heart donor, which can lengthen wait times.
“There is growing evidence that carefully selected hearts can still yield superior outcomes,” Dr. Stiller said. “If we just wait for the ideal donor, some children will not be able to receive a transplant.”
Both speakers said that expanding the donor heart pool requires technological advances such as organ perfusion and preservation techniques. A miniature perfusion platform is currently being evaluated in clinical trials in the United States.
“These systems will be revolutionary in the same way that we have already reimagined adult heart transplants,” Dr. Daly said.
Circulatory postmortem donation (DCD) is also a promising approach, but its use in pediatric transplantation remains limited. Experts stressed that as these practices expand, maintaining public trust will be essential.
“Public trust is everything,” Dr. Daly said. “If families lose faith in the system, donation rates can drop, potentially costing lives.”
Clinical innovations are also making a difference. Infants and young children can safely receive a heart from a donor with an incompatible blood type. This is a breakthrough that will significantly increase the number of available donor organs.
Expanding the pediatric heart donor pool requires a comprehensive approach
Beyond policy and technology, Dr. Stiller emphasized the importance of helping the public understand the long-term effects of transplants and the importance of organ donation. He said many pediatric heart recipients grow up to live full, healthy lives, finish school, develop careers and start families.
“When you see these kids becoming successful adults, it changes the conversation,” she says. “This visibility will help more families say yes to organ donation.”
Both speakers agreed that solving the pediatric donor shortage requires a multifaceted approach.
“There is not just one solution, but many: technology, clinical innovation, and a willingness to rethink how we use all donor hearts,” Dr. Stiller said.
ISHLT’s annual general meeting and academic sessions will be held from April 22 to 25 at the Metro Toronto Convention Center in Toronto, Ontario, Canada.
sauce:
International Heart and Lung Transplant Society
