The Children's Hospital of Philadelphia
Our Liver Transplant Program — Patient Evaluation and the Transplant Waiting List
Narrator: The first step in the process is an evaluation of your child's condition. This is when it's decided whether your child needs a transplant. At that time your child's name may be placed on the liver transplant waiting list.
The evaluation is usually done on an outpatient basis. You'll review medical history with a hepatologist, or liver specialist. Many blood tests will be performed. Special Xrays and any other required tests will be completed. This usually happens within a day or two, but it can take longer.
Your family will meet with members of the transplant team and talk about the surgical procedure, donor options, and pre and postoperative care. They will talk about risks and possible complications as well. Team members will answer each and every question you have about the process. Try to write down questions as you think about them so you'll remember to ask them when you meet with the team.
Once it has been decided that a liver transplant is needed, your child will be listed with the United Network for Organ Sharing, or UNOS, for liver transplant at the Children's Hospital of Philadelphia. This is a national agency that works with the government and tracks people who need transplants. They maintain a national database and distribute organs as they become available according to need. UNOS follows the outcome for patients after a transplant indefinitely and can provide information on all centers that perform transplants. Your child's place on the transplant list will depend on a number of factors and a calculated score called PELD, or Pediatric End-Stage Liver Disease score. Children with the most urgent need are transplanted as soon as possible.
As in just about everything else in life, waiting can be the hardest part. There's no sure way of telling how soon a liver will become available. The best thing you can do is to keep things as normal as possible. Watch TV. Eat dinner. Do homework. Play games. Pet your dog or cat. Talk to your friends or family when you're feeling stressed out. And ask for help if you need it.
Most importantly, focus on the care and health of your child. You want your child to be as healthy as possible when the time of their transplant comes. Keep up with doctor visits and with regularly scheduled immunizations. It is very important to stay in touch with your transplant coordinator, especially if there are any changes in your child's health.
Always make sure that the transplant team knows where you are and has your phone numbers. When a suitable organ becomes available, you will be contacted immediately. You will be given a beeper to carry with you at all times. When the beeper goes off, you have to call the number on the display and be ready to go to the hospital. Have a bag packed and know how you're going to get there as quickly and as safely as possible. Remember, if the coordinator can't reach you when a liver becomes available, he may have to go to the next person on the list.
When the time comes and you are told that an organ is available, the coordinator will ask you some questions about your child's health. Have there been any recent colds, flu, or fever? Has there been any exposure to chicken pox, measles, or other infectious diseases? Once the decision has been made that your child is in their best possible health for a transplant, you will be asked to come to the hospital as soon as possible. Again, be ready. Your child should not eat or drink anything from this moment on in preparation for surgery.
There's one thing we should note. On very rare occasions, patients are called into the hospital sometimes as far as the operating room to find that the donor liver is unsuitable for the child. This can happen because the planning of the donor surgery and the transplant are timed very closely together to minimize the time the liver spends outside the body. If this happens it can be extremely disappointing. But bear in mind, the surgical team will only perform the operation when they are confident that the organ is perfect for your child.