When a child is facing heart failure and needs a transplant, expert care and treatment are especially critical. Why? Because children under 2 years of age have a 30% waitlist mortality rate due to limited organ availability. Studies show heart defects that occur before birth – known as congenital heart defects – are the most common reason a child is referred for a transplant.
To give families the hope and help they need, the pediatric cardiology and heart surgery program at Atrium Health Levine Children’s provides quality cardiac care – from preparing for surgery to adjusting to life with a new heart. Recognized both nationally and internationally, this program:
- Is among the nation’s leaders in survival rates for pediatric, providing the only pediatric heart transplant program in the region.
- Offers the region's only facility with pediatric open-heart surgery, pediatric catheterization labs and extracorporeal membrane oxygenation, a heart-lung bypass machine that supports infants and children with respiratory or heart failure.
- Completed its 100th pediatric heart transplant in early 2021, with now 110 transplants to date.
To help educate families and the community about pediatric heart transplants, experts across Levine Children’s pediatric heart surgery and transplant teams, including Gonzalo Wallis, MD; Thomas Maxey, MD; Adam Morrison, MD; Paul Kirshbom, MD; Celin Wittman,MSN, RN, CPNP; Katherine Robinson, BSN, RN, CCTC, CPTC; Stephanie Harakas, MSN, APRN, ACCNS-P; Darci Grochowski, MPAS, PA-C; Erika Wintering, MSN, PNP-AC; Abby Young, PA-C; Shari Schefer, MSW, LCSW; and Christine Smith, RD, answer important questions about eligibility, availability, surgery and recovery.
When does a patient become eligible for a heart transplant?
A patient is eligible for a transplant evaluation when traditional medical therapy is not enough to maintain normal blood flow in the body. After the transplant team completes a transplant evaluation, the patient is presented for transplant approval through a multidisciplinary selection committee process, the patient is registered with the United Network of Organ Sharing (UNOS) system, a private, nonprofit organization that manages the nation’s organ transplant system.
What is involved in the evaluation process?
The transplant evaluation includes:
- Educating the family on the transplant process, including the short- and long-term considerations.
- Ensuring the health of all other organs, including the lungs, liver, kidney, blood and bone marrow, through various tests (e.g., blood tests, radiologic imaging, etc.).
- Completing all necessary subspecialty consults, including infectious disease, nephrology (kidneys), gastroenterology (digestive system) and pulmonology (respiratory system).
- Performing a complete psychological and social assessment.
- Conducting a nutritional analysis.
In addition to the medical evaluation, it’s important to assess the level of family support of the potential organ recipient. A good candidate is a patient that has an acceptable level of risk to undergo the procedure with a high likelihood of success.
Who is involved in the heart transplant process?
The primary transplant team is a multidisciplinary team composed of physicians (e.g., heart failure/transplant cardiologists and cardiothoracic surgeons), advanced practice providers, transplant coordinators, social workers, dietitians, pharmacists, and financial coordinators. Our patients also rely on the care of our HEARTest Yard Congenital Heart Center (our outpatient office), our catheterization lab and Atrium Health Levine Children’s Hospital to navigate through the evaluation, listing, transplant event, and immediate post-transplant care. It takes a village to transplant a patient successfully.
What criteria are needed to be placed on the waiting list?
The patient must be approved by our transplant program’s multidisciplinary committee at a formal transplant selection meeting after a thorough medical and psychosocial evaluation.
How is the heart waiting list structured?
When our transplant program places a patient on the national waiting list, we enter the patient’s data and demographics, blood type, medical urgency and our location into the UNOS computer network. When an Organ Procurement Organization (OPO) gets consent for a donor, it also enters data from the donor, such as demographics, ABO blood type (Type A, Type B, Type O, or Type AB), donor size and location, into the UNOS system.
Using the combination of donor and patient information, the UNOS system creates a rank-order list of patients to be offered each organ, considering who was listed in UNOS first. The match is unique to each donor and each organ.
How long do patients have to wait for their new heart?
Waiting times vary depending on donor availability, the patient’s listed UNOS region, the patient’s waitlist priority status, and the patient’s blood type. Some other factors can also affect waiting time. For example, the patient may have developed antibodies to potential organ donors through previous exposure to blood or blood products. The Organ Procurement and Transplantation Network publishes regional and national waiting time averages.
Our waiting times at Levine Children’s Hospital are among the shortest in the U.S. Consider our waitlist data from 2019 and beyond:
- Average for children of all ages: 51 days for the highest priority waitlist status
- Average for children 0 to 18 months old: 4 to 5 months
- Average for children over 18 months old: 2 to 4 weeks
Can patients receive a heart from a donor of any age?
When matching organs and patients, size and blood type compatibility are the most important. As hearts get sicker, they often get bigger, allowing room for a larger heart. The acceptable upper weight limit for the patient’s new heart varies by transplant program.
If size and blood type match, the of the organ for transplant becomes the next most important aspect to consider.
Factors such as how the donor heart was afflicted, as well as their medical and social history also come into play.
What happens when a heart becomes available?
When a heart matches with a transplant patient, an official organ offer is made to our transplant program. The transplant coordinator is notified and reviews the offer with the transplant cardiologist. If deemed a suitable organ for our patient, we provide provisional acceptance of the offer, meaning the organ appears to be a strong fit for the patient with confirmation needed from additional reviews.
Once our patient becomes the primary recipient for the offer, we review the offer once again, communicate with the on-site OPO coordinator, and review the offer with the surgeon to ensure that it’s the best organ for the patient. At that point, we notify the patient’s family about the available heart. Initial coordination activities include:
- Entering the preoperative orders.
- Alerting all relevant hospital departments about the pending transplant (e.g., Cardiovascular Intensive Care Unit (CVICU), operating room and blood bank).
- Notifying MedCenter Air, our fleets of emergency and critical care jets, planes, helicopters and ambulances, to have a plane on standby.
- Coordinating travel logistics.
From the formal acceptance of the offer, the coordination process can take from 4 to 24 hours. Since an organ donor can potentially donate up to 8 organs to patients in need, coordinating with multiple transplant centers can impact timing. The overall goal is to maximize the potential for each organ to be donated and to heal as many patients as possible.
How long do heart transplant surgeries usually take?
The entire process lasts about 24 hours. The actual surgery, however, ranges from 6 to 12 hours depending on the amount of reconstruction required.
Are pediatric patients more at risk for complications during heart transplant surgeries than adults?
Children with congenital heart disease can be a challenging group of patients to transplant, since they usually have had 1 to 3 open-heart surgeries prior to the transplant surgery. These prior surgeries alter the normal anatomy of the child’s heart, blood vessels and chest, increasing the risk of the transplant surgery, since it requires reversing all the changes that have been made previously.
The good news is that children are amazingly resilient. In fact, we have had children riding tricycles in the CVICU 3 days after their transplant!
How long is the recovery after a heart transplant?
Most of our patients are in the hospital for 2 to 3 weeks after the transplant surgery before being sent home, but this varies from patient to patient. Once they no longer need intensive care, they are transferred to our Pediatric Progressive Care Unit, where the care team focuses on providing rehabilitation, improving nutrition, achieving stable medication levels (to prevent organ rejection) and educating the family and caregivers on how to care for a transplant recipient.
What is the care and treatment protocol following a heart transplant?
For the first month, our care team evaluates transplant patients on a weekly basis. For the second and third months, the appointments change to biweekly. Then, for the remainder of the first year, patients are evaluated monthly. These evaluations include biopsies of the heart, ultrasounds, electrocardiograms, labs, and clinical assessments by the transplant medical providers.
At the 1-year mark (and periodically thereafter), our care team performs an evaluation of the coronary arteries using a left heart catheterization. After the first year, patients are seen in the clinic every 3 months indefinitely.
Are patients able to communicate with the donor family after the transplant?
Yes, but this needs to be done in a way that protects the donor family’s privacy under Health Insurance Portability and Accountability Act laws and wishes, respects the donor family’s grieving process, and considers the transplant recipient’s recovery. We provide guidance to the recipient family on how to write a letter thanking the donor family for the gift of life.
What is the long-term prognosis for patients who receive a heart transplant?
While a heart transplant is a wonderful treatment option for end-stage disease, it’s not a cure. It does provide a significant improvement in both quality and quantity of life.
On average, there are about 450 pediatric heart transplants performed each year in the U.S. We work with the Pediatric Heart Transplant Society and Advanced Cardiac Therapies Improving Outcomes Network to share best practices and improve the care we provide to our littlest heart warriors. Just 10 years ago, the organ survival rate for 10 to 12 years was 50%. Now, that average is 19 years. The survival rates keep getting better through collaboration across various transplant centers.
At Levine Children’s, our renowned heart specialists deliver expert care for every pediatric congenital heart condition – from before they are born and throughout adulthood. Named a Best Children’s Hospital in cardiology and heart surgery by U.S. News & World Report, Levine Children’s Hospital offers the most advanced and most complete pediatric heart care in the region.
For more information about Atrium Health’s specialty cardiac children’s care, visit our pediatric heart surgery and cardiology and pediatric heart transplant pages.
