Advances in pediatric heart care are helping more children survive long enough to receive transplants – but a severe shortage of donor hearts means too many are still dying while waiting, experts warned today at the 46th Annual Meeting and Scientific Session of the International Society for Heart and Lung Transplantation (ISHLT).
Presentations by surgeons in the United States and Europe highlighted a growing paradox: Medical advances are keeping more children alive, but the supply of donor hearts has not kept up.
Costly delay in implementing US Transplant Modernization Act
Kevin P. Daly, MD, a pediatric cardiologist at Boston Children’s Hospital, said breaking the barrier in the U.S. Transplant Modernization Act would help the flow of donor hearts to recipients. Implementation of the Modernization Act, which has been slowed by federal contracting delays, will allow the committees to continue work on the proposed shift from a hierarchical system to a continuous delivery model that better prioritizes medical urgency and system efficiency. The new system will also give higher priority to children, with additional allocation points for children and improvements in pediatric urgency categories.
“Allocation policy matters, but it cannot solve the organ shortage,” said Dr. Daly, president of the Pediatric Heart Transplant Society.
Globally, more than 600 pediatric heart transplants are performed each year, yet mortality rates on the waiting list remain high. In the United States, more than 1 in 6 babies on the waiting list do not survive.
At the same time, advances such as ventricular assist devices are allowing critically ill children to survive longer while waiting for a transplant – often months or even years.
“It’s a paradox,” said Brigitte Stiller, MD, professor and head of pediatric cardiology at the University Heart Center Freiburg in Germany. “We’re saving kids on the waiting list, but we can’t find enough donor hearts for them.”
Dr. Stiller argued that the field should reconsider how donor hearts are selected and used.
“The decline in pediatric heart transplants is not luck, it’s a problem we can redesign,” he said.
Experts urge greater use of donor hearts
A major shift involves moving beyond the idea of the ‘perfect’ donor heart. As children become more stable on mechanical support, physicians may often be reluctant to accept anything less than an ideal heart donor—potentially increasing wait times.
“There is growing evidence that carefully selected hearts can still produce excellent outcomes,” Dr. Stiller said. “If we just wait for the ideal donor, some children will never get a transplant.”
Both speakers said technological advances are needed to expand the donor heart pool, including organ perfusion and preservation technologies. In the United States, miniature perfusion platforms are currently being evaluated in clinical trials.
“These systems will be revolutionary, just as they have already reshaped adult heart transplantation,” said Dr. Daly.
Donation after circulatory death (DCD) is another promising approach, although its use in pediatric transplantation is limited. Experts stressed that as these practices expand, it will be essential to maintain public trust.
“Public trust is everything,” Dr. Daly said. “If families lose confidence in the system, donation rates could fall, and that would cost lives.”
Clinical innovations are also making a difference. Infants and young children can safely receive hearts from donors with incompatible blood types – a breakthrough that significantly increases the number of available donor organs.
A comprehensive approach is needed to expand the donor pool for pediatric hearts.
Beyond policy and technology, Dr. Stiller emphasized the importance of helping the public understand the long-term effects of transplantation and the importance of organ donation. He said many pediatric heart recipients grow up to live full, healthy lives, finishing school, building careers and starting families.
“When people see these kids become thriving adults, it changes the conversation,” he said. “That visibility may help more families say yes to organ donation.”
Both speakers agreed that solving the child donor shortage will require a multi-pronged effort.
“There is not just one solution, but multiple solutions: technology, clinical innovation, and a willingness to rethink how we use each donor heart,” Dr. Stiller said.
The ISHLT Annual Meeting and Scientific Sessions is being held at the Metro Toronto Convention Center in Toronto, ON, Canada from April 22-25.
