Heart Transplant Waiting List
How hearts are allocated
If the pediatric heart transplant team at Children's Hospital of Philadelphia determines that your child is a candidate for a pediatric heart transplant, your child will be listed through the United Network of Organ Sharing (UNOS). This organization matches solid organ (heart, lungs, liver, kidneys, intestines) donations with adults and children in the United States.
Children are listed for heart transplantation according to medical urgency. That means sicker children typically receive higher priority. Criteria have been developed to ensure that all people on the waiting list are assessed by the same criteria regarding the severity of their illness and the urgency of receiving a transplant.
Once UNOS receives the data from local hospitals, people waiting for a transplant are placed on a waiting list and given an urgency status.. The people in most urgent need of a transplant are placed at the highest status and are given first priority when a donor heart becomes available.
When a donor organ becomes available, a computer searches all the people on the waiting list for a heart and sets aside those who are not good matches for the available heart. A new list is made from the remaining candidates. The person at the top of the list is considered for the transplant. If that person is not a good candidate, for whatever reason, the next person is considered, and so forth. Many factors are involved in determining the order of candidates on the list, including urgency status, time spent on the waiting list, and the geographical distance between the donor and potential recipient.
Where you will wait
Some children are well enough to wait for their new hearts at home. However, many children with severe end-stage heart failure await transplantation in the hospital. Our pediatric heart transplant team is experienced in providing the full range of cardiovascular support, including:
- Intravenous medications
- Full mechanical support of the heart with extracorporeal mechanical oxygenation (ECMO)
- Ventricular assist devices (VADs)
This can be a difficult time for both your child and family. Our team works to help your child remain in the best possible health and to support your family through the waiting period with close medical monitoring, nutritional guidance and psychological support.
We also encourage your child, if able, to participate in the Cardiac Center's pre-transplant exercise program, led by Stephen Paridon, MD, director of the Exercise Physiology Laboratory. Appropriate exercise before transplantation can help speed recovery afterwards.
Heart transplant waiting period
Sometimes, children wait only a few days or weeks before receiving a donor organ. It may also take months or years on the waiting list before a suitable donor organ is available. During this time, your child will have close follow-up with their physician and the transplant team. Various support groups are also available to assist you during this waiting time.
A major problem affecting the availability of hearts for transplant is that these organs cannot come from living donors. Neither donor nor recipient can live with only a segment of a heart. Therefore, people in need of a heart transplant must wait for the death of a person who generously decided to be an organ donor.
Availability of donors for heart transplantation is also affected by the size of the child needing the transplant. For instance, an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must wait for an appropriately sized organ to become available.
Because of the shortage of donor organs, the waiting time can be long and unpredictable; some children do not survive it. That's why CHOP has joined the Gift of Life Donor Program in encouraging individuals to register today as organ and tissue donors.
When a heart becomes available
It's vital that the transplant center be able to reach you if a suitable heart becomes available. You will be asked to provide us with contact phone numbers including home, work, cell phones, nearby relatives or neighbors. If you travel, you should contact the heart transplant coordinator with your itinerary, destination and phone numbers before you leave.
If the coordinator can't reach you, the heart may have to go to the next potential recipient.
Because no one knows for sure when a heart will become available, it's very important that your family be prepared to travel to the hospital at a moment's notice:
- Whether you will be traveling to the hospital by car, plane or train, you should make your travel arrangements now.
- Pack a bag for yourself and your child. Make a list of things you want to bring with you.
- If you have other children at home, be sure to make any necessary arrangements for them ahead of time, too.