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:
- 41 in the newborn- to 1-year-old age group
- 166 in the 1- to 5-year-old age group
- 91 in the 6- to 10-year-old age group
- 171 in the 11- to 17-year-old age group
How livers are allocated
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.
Liver transplant waiting period
Waiting for a suitable liver donor can take days, weeks, months or sometimes years. Your child’s waiting time depends largely on the degree of her illness. While you’re waiting for a donor, the pediatric liver transplant team will work to keep your child in the best possible health. Be sure to:
- Bring your child to his regular well visits and liver transplant team appointments.
- See your pediatrician when he’s sick.
- Keep your child’s immunizations up-to-date. In some cases, especially with infants, vaccinations may need to be given ahead of the regularly recommended schedule, in preparation for liver transplant.
- Should your child be exposed to any of the childhood diseases for which he hasn't been vaccinated, please contact the transplant coordinator.
- Stay in touch with the liver transplant coordinator and let him know about any changes in your child's health.
When a liver becomes available
It's vital that the transplant center be able to reach you if a suitable liver becomes available. You will be asked to provide us with contact phone numbers including home, work, cell phones, nearby relatives or neighbors. In addition, if necessary you will be provided with a beeper. If you travel, you should contact the liver transplant coordinator with your itinerary, destination and phone numbers before you leave.
If the coordinator can't reach you, the liver may have to go to the next potential recipient.
Because no one knows for sure when a liver 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.