Frequently asked questions

Where do transplanted organs come from?

Most livers that are transplanted come from deceased organ donors. Organ donors are adults or children who have become critically ill and will not live as a result of their illness. An adult donor may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the U.S.

How are transplanted organs allocated?

The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplanted organs, including liver, kidney, pancreas, heart, lung, and intestine.

UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The medical transplant team that currently follows your child is responsible for sending the data to UNOS and updating them as your child's condition changes.

Criteria have been developed to ensure that all people on the waiting list are judged fairly as to 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 a "status" code. The people in most urgent need of a transplant are placed highest on the status list, and are given first priority when a donor organ becomes available.

How long will it take to get a new liver?

There is no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ. If no living-related donor is available, it may take months or years on the waiting list before a suitable donor organ is available. During this time, your child will receive close follow-up with the physicians and the transplant team.

How are we notified when a liver is available?

You will be notified by phone or pager that an organ is available. You will be told to come to the hospital immediately so your child can be prepared for the transplant.

What is involved in liver transplant surgery?

Once an organ becomes available to your child, you and your child will immediately be called to the hospital. This call can come at any time, so you should always be prepared to go to the hospital. Once at the hospital, your child will have final blood work and tests completed to confirm the match of the organ.

Your child will then go to the operating room. The transplant surgery may require several hours, but will vary greatly depending on each individual case. During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.

What happens after liver transplant surgery?

After surgery, your child will go to the Pediatric Intensive Care Unit to be closely monitored. The length of time your child will spend in the PICU will vary based on your child's unique condition. After your child is stable, he or she will be sent to the special unit in the hospital that cares for liver transplant patients and will continue to be closely monitored. You will be educated on all aspects of caring for your child during this time. This will include information about medications, activity, follow-up, diet and any other specific instructions from your child's transplant team.

What is rejection?

Rejection is a normal reaction of the body to a foreign object. When a new liver is placed in a person's body, the body sees the transplanted organ as a threat and tries to attack it. The immune system makes antibodies to try to kill the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to successfully live in a new body, medications must be given to trick the immune system into accepting the transplant and not thinking it is a foreign object.

What are the symptoms of rejection?

The following are the most common signs and symptoms of rejection. However, each child may experience symptoms differently. Symptoms may include:

• Fever
• Tenderness over the liver
• Elevated liver numbers including the AST, ALT or bilirubin

Your transplant team will instruct you on who to call if any of these symptoms occur.

What is done to prevent rejection?

Medications must be given for the rest of the child's life to fight rejection. Each child is unique and the transplant team has preferences for different medications. Some of the anti-rejection medications most commonly used include the following:

• Cyclosporine
• Tacrolimus
• Azathioprine
• Mycophenolate mofetil
• Prednisone
• Basiliximab

New anti-rejection medications are continually being approved. Physicians tailor drug regimens to meet the needs of each individual child. The doses of these medications may change frequently as your child's response to them changes. Because anti-rejection medications affect the immune system, children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection. Blood tests to measure the amount of medication in the body are done periodically to make sure your child does not get too much or too little of the medications. White blood cells also are an important indicator of how much medication your child needs.

What about infection?

The risk of infection is especially great in the first few months because higher doses of anti-rejection medications are given during this time. Your child most likely will need to take medications to prevent other infections from occurring. Some of the infections your child will especially be susceptible to include fungus (yeast), herpes and respiratory viruses.

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