Pediatric Heart Transplants: Preparation and Process

For some children, a heart transplant is a life-changing, life-saving intervention. This delicate months-long process involves a patient, their entire family and a team of expert physicians and health care providers.

Pediatric Cardiologist Dr. Kaitlin Ryan, Heart Transplant Coordinator Ashley Hilsabeck and Director of the Pediatric Heart Transplant Program Dr. Umar Boston describe the process of receiving a heart transplant at Le Bonheur Children’s and the resources provided for patients and their families who undergo heart transplant.

Initiating the Heart Transplant Process

When determining if a child needs a heart transplant, Ryan explains that it is a team effort comprising multiple physician providers and healthcare associates. Some of the reasons a child might need a heart transplant include heart muscle disease, such as restrictive cardiomyopathies, and certain types of congenital heart disease.

When the decision is made to proceed with the heart transplant, the child’s team provides much-needed support when relaying the news to parents and caregivers.

“We frequently tell families this is something no one should have to go through, but we do the best to be supportive of every step of the grieving process, which is what this is. They're grieving for a life they thought their child would have, free of medical problems and surgeries and medicines and all of those things,” states Ryan. “We work together with our transplant coordinators, our psychologists and the rest of the team to do everything we can for the patient and the family.”

Whole-Health Evaluation

The transplant list is priority-based, with the sickest children at the top of the list. “The wait here at Le Bonheur in Memphis is actually shorter than a lot of other places, just because of our geography,” adds Ryan. “It can vary between two to four weeks for a bigger or an adult-sized patient. It could be as long as six months for a smaller child.”

It can sometimes be difficult to gauge when a patient is ready for a transplant, says Boston. Meaning, the transplant team wants to ensure the child, while very sick from a cardiology perspective, is as healthy as possible in other areas. This involves a thorough assessment of about 15 different systems of the body (e.g. pulmonology, nephrology, neurology and even psychiatry).

“We really want to see that the kidneys and liver are working well. We know the heart isn't working well, but we need to have some of the other organs working pretty well. Patients need to have some kind of reserve to undergo a big open heart operation,” he explains. “Once we've identified those basic factors and the anatomy is favorable, we also look at whether or not their immune system is good enough to accept a particular donor heart.”

Time Is of the Essence

Many logistics go into the actual operation. The transplant timeline involves two teams, because most of the hearts Le Bonheur receives are not from the Memphis area. Team one, the procuring team, is responsible for flying out to secure the donated heart. At the same time, Boston and his team prepare the patient for the heart transplant procedure. All of this must be done in a very efficient way for the transplant to be successful.

“We're restricted to time. Usually, we need to get the donor heart back into the recipient within about five to six hours. If not, the heart will become non-functional. It's a very efficient process, a very timely process,” he notes.

Educating Patients and Families

As a heart transplant coordinator, Hilsabeck collaborates with the medical team to evaluate each case and help ensure all of the criteria are met to be placed on the list. Transplant coordinators also spend a great deal of time educating parents and caregivers—which starts from the very first day they meet. Hilsabeck describes this process as humbling.

“Having children of my own, I just feel so gracious that the families allow us to step into their lives. We do take up a big role in terms of caring for them and getting to know them. We're constantly in communication with them via phone or various other forms of communication,” she shares. “They grieve, and we really have to help them through that, but we also get to watch them on the other side and be that encourager and be able to cheer them on as they overcome mountains they didn't think they could.”

Parent and caregiver education is robust at Le Bonheur, encompassing the child’s current pre-transplant status all the way through post-transplant responsibilities. For example, the child will have certain diet limitations because of potential interactions with their medications. It’s also important that parents and caregivers fully understand infection control practices and adhere to the timing of medication.

Pediatric Heart Transplantation: An Innovative, Evolving Field

Pediatric cardiac surgery is a continuously evolving field and an innovative one. Current data shows that the one-year survival rate for heart transplant is greater than 90% and five-year survival rate is greater than 85% for all children—which is significantly improved from 10 and 20 years ago when transplants were in their infancy, says Boston.

One area Boston wants to focus on in the future is limitations of heart transplantation. The immune system response to any type of transplantation is very delicate. “As soon as the body’s immune system sees a foreign organ within it, it will try to reject it. We're constantly trying to quell the immune system so it doesn't attack the organ. It's a fine balance, because you can give too much immunosuppression and that leads to infection. Too little immunosuppression can lead to rejection.”

Despite the challenges, Boston, Ryan, and Hilsabeck all find pediatric heart transplantation to be very rewarding.

“What I enjoy the most is seeing them thrive and flourish, especially knowing where they were,” shares Hilsabeck. “Some of the kids remember what it was like to feel that sick, and they really understand we are trying to help them be successful with the heart transplant. It's incredible to watch them move through the journey and to see them enjoy life.”