Winning the race against time: How technology and policy have transformed pediatric heart transplant survival
For a child with end-stage heart failure, being placed on the transplant waiting list begins a terrifying race against time. Decades ago, this was a race that few won.
For me, research on this issue is deeply personal. I was born with an unforeseen congenital heart defect that was repaired shortly after my birth, and I’ve lived my entire life thanks to the sort of medical advances our recent paper investigates. This is what drove our team to ask this simple question: For children on the heart transplant waiting list today, have things truly gotten better? We explored decades of data from the United Network for Organ Sharing (UNOS) and found a story of unbelievable progress.
In our paper, “Trends in Survival on the Pediatric Heart Transplant Waiting List,” published in Pediatric Cardiology, we analyzed the outcomes of more than 18,000 pediatric heart transplant candidates between 1987 and 2023. The initial data was grim. In the late 1980s, a child’s chance of surviving one year on the waiting list was just 21.1%.
By 2023, the number had risen to 70.5%. So, what changed?
The most visible change has been the technology that we use. Patients now have access to powerful mechanical circulatory support devices, such as VADs and ECMO, which serve as essential bridges to transplantation. By supplementing or replacing a failing heart, they afford precious time to patients until a donor heart becomes available.
But these medical and technological advancements are only half the story. The other half is policy. Deciding who receives a life-saving organ and when is one of the most challenging tasks in medicine, both logistically and ethically. This study demonstrated how policy can be a form of medical intervention itself; the impact of a new allocation rule can be just as profound as any surgical breakthrough or drug discovery.
Two major UNOS pediatric allocation policy updates, in 2006 and 2016, served to prioritize the sickest patients and expand geographic sharing. Following their implementation, survival rates for these high-risk children jumped significantly, representing thousands who were able to leave the hospital, celebrate birthdays and grow up.
However, the work is not done. This progress has not been shared equally, with repeat recipients failing to demonstrate similar longitudinal survival gains. The same is true for patients with congenital heart disease, who continue to experience lower waitlist survival rates compared to non-CHD candidates.
Medicine is at its best when science and policy advance together. This data gives us a clear direction: to refine our policies and technologies to address these persistent disparities and give each child the best chance they can have in their race against time.
By Chase Robinson, third-year medical student, and Dr. Abbas Rana, Baylor College of Medicine
