According to the latest statistics from the United Network for Organ Sharing (UNOS), about 470 children in the United States were waiting for a liver transplant in 2012, including approximately:
If your child has been placed on the UNOS waiting list, you probably have a number of quesitons. Be sure to visit our Liver Transplant FAQ page for answers to any questions you may have, including these commonly asked ones:
Most transplanted livers come from deceased organ donors. Organ donors are adults or children who have become critically ill or injured and have been declared brain dead. If the donor is an adult, he may have agreed to be an organ donor ahead of time. Parents or spouses can also agree to donate a relative's organs. No organs are taken from deceased donors without consent of next of kin.
Your child may get a whole liver or a segment of one. If an adult liver is available and is an appropriate match for two children (or a child and an adult) on the waiting list, the donor liver can be divided into two segments, and each part transplanted (called a split liver transplant). If a segmental liver is used, it is selected to be the right size for the recipient even if it is only part of an adult liver.
A living family member or close family friend may also be able to donate a section of his liver — called a living donor transplant. Relatives who donate a portion of their livers can live healthy lives with the remaining segment, which will grow to original size of the whole liver. The liver is the only vital organ in the human body that can do this.
The Children's Hospital of Philadelphia's pediatric liver transplant team determines whether a liver transplant is needed and UNOS is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung and intestine.
UNOS receives data about adults and children who need organ transplants from hospitals and medical centers throughout the country. The liver transplant team sends the data to UNOS and updates it as your child's condition changes.
UNOS has developed criteria to ensure that all people on the waiting list are judged fairly, based on how ill they are and how badly they need a transplant. Organ allocation for children is based on the Pediatric End-Stage Liver Disease (PELD) score. The adults and children in most urgent need of a transplant are placed highest on the status list and are given first priority.
When a donor liver becomes available, a computer searches all the people on the waiting list and sets aside those who aren't good matches (such as the wrong size or wrong blood type) for the available liver. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he or she is not a good candidate, for whatever reason, the next person is considered, and so forth.
It's important to remember that because the status lists are ranked by computer and are generated as donors become available, each donor generates a different list. For this reason no recipient has a specific number on the list.
Unfortunately, there's no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ, but it may also take months or years. The waiting time depends largely on the degree of illness of the child. During this time, the pediatric liver transplant team will work to keep your child in the best possible health. This waiting time can be difficult, but there are quite a few things you can do to help your child — and the rest of the family — cope.
Reviewed by: Elizabeth B. Rand, MD
Date: November 2012