Helping more kids survive the waitlist for a new heart

About three-fourths of children on the pediatric waitlist get a donor heart within three months, but some wait years.

For many children on the pediatric heart transplant waiting list, the wait can be a year or longer — as available organs are directed to the sickest children first.

For about three-fourths of those kids, it is less than three months before they are matched with a donor and the surgery is completed.

The heart transplant itself is a complicated procedure that takes four to six hours to complete. But for some young patients, the time waiting can be just as dangerous and is one reason why cardiothoracic surgeons at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, are leading the discussion about ways to help make sure more infants survive until they can get a transplant.

Two strategies can be used to help more kids — especially those under 1 year old — survive until they get a transplant, according to Deborah Kozik, D.O., pediatric cardiothoracic surgeon at Norton Children’s Heart Institute. First, increase the availability of donor hearts for transplant, and second, advance the support of the child’s heart while waiting.

“Continued efforts to improve options for ventricular assist devices or other mechanical circulatory support for infants as well as pushing the boundaries to increase the number of donated hearts that can be transplanted hopefully will allow more of these fragile infants to undergo a successful heart transplant,” Dr. Kozik said.

Expanding donor heart criteria

Using donor hearts that don’t match the recipient’s blood type (ABO incompatible) has gradually increased over the past decade with no significant impact on survival or rejection one year after transplant, according to research conducted by Dr. Kozik.

Norton Children’s Heart Institute

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Wider use of hearts from donors whose heart had stopped — rather than those who experienced brain death — is also an opportunity to help more children needing transplants. According to Dr. Kozik, while donations after cardiac death have fallen out of favor over the years, recently developed technology could keep a donor’s heart beating while in transit.

The technology is currently available only for adult heart transplants and has shown a one-year survival rate of more than 90%. The experience with adult patients provides a framework for application to pediatric hearts in coming years, according to Dr. Kozik.

Keeping kids healthier while they wait

Children waiting for donor hearts often require mechanical ventilation and have renal and liver difficulties. Their risk of not making it to a transplant or dying within a year of transplant is higher.

The number of infants supported with ventricular assist devices (VADs) that help the heart pump blood has lagged behind VAD use in older children because of complications adapting the technology to their tiny bodies. Nonetheless, ongoing innovation in surgical technology could lead to using the VAD safely to bridge high-risk infants to a successful transplant, according to Dr. Kozik.