Waiting for a new heart can take time. For children awaiting transplants, and for their families, the journey can require immense resilience.
Because of their serious conditions, these children have to remain in the hospital until a heart becomes available, sometimes for months on end, said cardiologist E. Kevin Hall, director of the Pediatric Heart Transplant Program at Yale New Haven Children’s Hospital (YNHCH), the only accredited program of its kind in Connecticut or Rhode Island.
“The process is deeply emotional, requiring constant vigilance because of the vulnerability of these young patients,” Hall said.
One recent patient — just a toddler — spent eight months in the hospital before a new heart became available. He had grown significantly since his admission, and for Hall, the patient’s discharge was especially memorable.
“I remember walking out with the family to get them in their car, and he was just staring wide-eyed at all the trucks driving by,” Hall said. “He had spent so long behind the glass window of a hospital room; it was remarkable to be outside and have the fresh air hit him in the face. It was a truly magical moment.”
Jeremy Asnes and Britton Keeshan perform a cardiac catheterization procedure on a pediatric patient.
Each year, approximately 600 to 700 pediatric heart transplantation procedures are performed worldwide, according to the registry of the International Society for Heart and Lung Transplantation.
In 2019, YNHCH became the first hospital in Connecticut or Rhode Island to receive certification from the United Network for Organ Sharing (UNOS) to perform pediatric heart transplants. UNOS serves as the nation’s Organ Procurement and Transplantation Network under federal contract.
Since then, the children’s hospital has performed six pediatric heart transplants, including for children as young as one year old. It has also taken over the care of three additional children whose transplant surgeries occurred elsewhere but longed to receive their care closer to home.
“Those children have, thankfully, all done remarkably well,” said Hall, who also serves as an associate professor of pediatrics and the medical director of the Pediatric Heart Failure and Cardiomyopathy Program at Yale School of Medicine (YSM). “Our outcomes are excellent.”
Optimizing outcomes
The Pediatric Heart Transplant Program is an integral part of Yale New Haven Hospital’s Children’s Heart Center, which provides specialized, comprehensive care for the full spectrum of congenital heart defects, cardiomyopathy, and other complex heart conditions. By providing expert evaluation, management, and treatment at a single location, the center offers Connecticut and Rhode Island families access to a full range of medical and surgical heart failure care close to home.
For heart transplant patients, much of the journey happens outside the operating room with pediatric cardiologists like Hall. In his role, he manages medical care both before and after the transplant, leading a multidisciplinary group of caregivers dedicated to improving the symptoms, outcomes, and quality of life for children when their hearts are unable to function efficiently on their own. This includes utilizing supportive measures such as specialized medications and, when necessary, heart transplantation.
Each child is different, Hall notes, stressing the importance of developing highly tailored individual treatment plans. This approach requires a close rapport with children and their families to build trust and maximize the chances of an optimal outcome.
“Our job is to remain strong and to present the facts while also offering hope and optimism,” Hall said. “These cases are certainly demanding for the medical team, but the results have been beautiful. We are just delighted with how all these children have done.”
The gift of life
Pediatric hearts for transplant are scarce, and the children who receive them are typically among the sickest patients on the list. While waiting for a donor, they must remain in the hospital, as it’s frequently unsafe for them to be at home.
“When we do find a heart, I recognize that it is through the profound tragedy of another family, and my heart goes out to them for their loss,” Hall said. “At the same time, it’s an incredibly hopeful moment for the recipient’s family, who have long struggled watching their own child suffer.”
When a heart becomes available, the process moves with urgency and precision. It requires immense coordination — including, sometimes, a surgical team traveling far away to perform a final inspection of the donor heart and retrieving it, often via jet. If the donor heart is not in the recipient and beating within four hours, the chances of positive outcomes can be significantly reduced.
Once the heart arrives at YNHCH, Hall’s colleagues, Peter Gruber and Madonna Lee, are the surgeons who perform the transplant. The broader team includes anesthesiologists, cardiologists, transplant coordinators, critical care physicians, nurses, social workers, pharmacists, and surgical specialists.
Pediatric intensive care unit team.
“It’s a profound privilege,” said Gruber, professor of surgery at YSM and vice chair of research for the Department of Surgery, chief of pediatric cardiac surgery, and the surgical co-director of the Children’s Heart Center at YNHCH. “Few are provided the opportunity to transform a child’s lethal condition into a life with a healthy new heart. The credit goes to the entire team.”
Following the transplant, Hall and his colleagues aim to have patients home within 14 days, although it sometimes takes longer. While the procedure is life-changing, it requires careful, long-term monitoring and lifelong medication.
The Pediatric Heart Transplant Program is not only changing the lives of children and their families but also those of the physicians themselves. For Hall, this work is deeply personal.
“We put so much effort into every child,” he said. “In these cases, we are taking a family who may have felt they were out of options, at their wits’ end, and giving them back the gift of life. It is an honor to take part in these procedures.”
