Advances in pediatric heart care are helping more children survive long enough to receive a transplant—but a critical shortage of donor hearts means too many are still dying while they wait, experts warned today at the International Society for Heart and Lung Transplantation (ISHLT) 46th Annual Meeting and Scientific Sessions.
Presentations from surgeons in the United States and Europe highlighted a growing paradox: medical progress is keeping more children alive, but the supply of donor hearts has not kept pace.
Costly Delays in Implementing the U.S. Transplant Modernization Act
Kevin P. Daly, MD , a Pediatric Cardiologist at Boston Children’s Hospital, said breaking the bottleneck 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, would allow committees to continue work on a proposed shift from a categorical system to a continuous distribution model that better prioritizes medical urgency and system efficiency. With additional allocation points for children and refinements to pediatric urgency categories, the new system would also give children higher priority.
“Allocation policy matters, but it cannot solve a shortage of organs,” said Dr. Daly, president of the Pediatric Heart Transplant Society.
Globally, more than 600 pediatric heart transplants are performed each year, yet waiting list mortality remains high. In the United States, more than 1 in 6 children on the waiting list do not survive.
At the same time, advances such as ventricular assist devices are allowing critically ill children to live longer while awaiting transplant—often for months or years.
“That is the paradox,” said Brigitte Stiller, MD , Professor and Head of Pediatric Cardiology at University Heart Center Freiburg in Germany. “We are saving children on the waiting list, but we are not finding enough donor hearts for them.”
Dr. Stiller argued that the field must rethink how donor hearts are selected and used.
“Scarcity in pediatric heart transplantation is not fate, it is a problem we can redesign,” she said.
Experts Urge a Greater Utilization of Donor Hearts
One key shift involves moving beyond the idea of the ‘perfect’ donor heart. As children become more stable on mechanical support, clinicians may often be reluctant to accept anything less than an ideal donor heart—potentially prolonging wait times.
“There is growing evidence that carefully selected hearts can still lead to excellent outcomes,” Dr. Stiller said. “If we wait only for the ideal donor, some children will never receive 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, miniaturized perfusion platforms are currently being evaluated in clinical trials.
“These systems would be revolutionary, just as they have already re-shaped adult heart transplantation,” Dr. Daly said.
Donation after circulatory death (DCD) is another promising approach, though its use in pediatric transplantation remains limited. Experts emphasized that maintaining public trust will be essential as these practices expand.
“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.
Expanding the Donor Pool for Pediatric Hearts Requires a Comprehensive Approach
Beyond policy and technology, Dr. Stiller stressed the importance of helping the public understand the long-lasting effects of transplantation and the importance of organ donation. She said many pediatric heart recipients grow up to live full, healthy lives, finish school, build careers, and start families.
“When people see that these children become thriving adults, it changes the conversation,” she said. “That visibility can help more families say yes to organ donation.”
Both speakers agreed that solving the pediatric donor shortage will require a multi-pronged effort.
“There is not just one solution, but many: technology, clinical innovation, and a willingness to rethink how we use every donor heart,” said Dr. Stiller.
The annual meeting and scientific sessions of ISHLT are being held from 22–25 April at the Metro Toronto Convention Centre in Toronto, ON, Canada.
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ABOUT ISHLT
The International Society for Heart and Lung Transplantation (ISHLT) is a not-for-profit, multidisciplinary, professional organization dedicated to improving the care of patients with advanced heart or lung disease through transplantation, mechanical support, and innovative therapies via research, education, and advocacy. ISHLT members focus on transplantation and a range of interventions and therapies related to advanced heart and lung disease.