When Your Child Needs a Liver Transplant

Being told that your child needs a liver transplant may leave you feeling scared, angry, or confused. You might not fully understand why your child needs a new organ or where the new organ will come from. Just thinking about the months ahead may fill you with dread and worry.

Fortunately, most liver transplants are successful. Many kids who undergo these procedures go on to live normal, healthy lives once they recover from surgery.

In the long term, kids will need to take medicines to help prevent complications and have regular checkups to monitor liver function.

Causes of Liver Failure

The liver — a soft, triangular-shaped organ — is the body’s largest solid organ. It lies next to the stomach on the right side of the abdomen. The liver has many jobs, like cleansing the blood of toxins, producing bile (which helps to break down food during digestion), and storing energy in the form of a sugar. When the liver stops working as it should, a child can get very sick, and even die.

The liver might fail to work properly for many reasons. Among children, the most common reason for liver failure is biliary atresia. This happens when the liver’s bile ducts (tubes that carry bile out of the liver) are missing or blocked. When bile can’t leave the liver, it causes liver damage, or cirrhosis. The causes of biliary atresia are unknown. Some children who have it are born with it; others develop it later.

Other reasons the liver might stop working include:

• alagille syndrome: an inherited (genetic) disease that causes liver abnormalities and other problems
• alpha-1-antitrypsin deficiency: this inherited disorder prevents the body from producing the protein alpha-1-antitrypsin, leading to lung and liver damage
• hemochromatosis: an inherited disease that causes the body to take in and store too much iron, which can damage many organs
• hepatitis: this liver inflammation can have a variety of causes
• Wilson disease: an inherited disorder that causes a build-up of copper in the body, which can damage many organs

Getting a Healthy Liver

Doctors only recommend a liver transplant after they have exhausted all other treatments for trying to save a child’s liver.

During transplant surgery, the sick liver is removed and replaced with a healthy liver (or just part of a liver) donated from another person. Most organ donors are adults and children who have agreed (or their guardians have agreed) to donate their organs in the event of an untimely death. They choose to donate the organs because they want to help someone else who is sick.

If a child doesn’t need a whole new liver, sometimes a portion of a liver can be donated from a living person, like a parent. This is called a “living-related donor transplant.” A person who donates part of his or her liver can have a normal-sized liver again within just a few weeks of donating the tissue because livers are organs that grow new cells on their own (called regeneration).

Likewise, a child who receives a portion of a new liver will regenerate enough liver tissue to have a normal-sized liver within a few weeks of transplantation.

Determining When Surgery Is Needed

If your doctor thinks your child might benefit from a liver transplant, you’ll be referred to a transplant center. There, a team of surgeons, liver specialists (hepatologists), a transplant coordinator, nurses, nutritionists, psychologists, and social workers will evaluate your child to determine whether he or she is a good candidate for the procedure.

The evaluation will include a medical history, a physical examination, and some tests, including blood tests and imaging tests (such as an abdominal ultrasound or CT scan). To check the liver more closely, the doctors also might perform a biopsy (in which a sample of the liver is removed to be examined under a microscope).

During the evaluation, the transplant team will try to find out as much information about your child as possible. This is also a time for you and your child to learn about transplant surgery. The transplant team is there to provide information and support. Be sure to ask them questions if you don’t understand something.

Waiting for an Organ

If the transplant team decides that a liver transplant is the right treatment, your child will be placed on an organ waiting list. This list has the names of all people who are waiting for organ transplants. About 15,000 Americans are on the waiting list for a liver transplant, including more than 500 children.

A group called the United Network for Organ Sharing (UNOS) oversees this list and is in charge of fairly determining who receives the donated organs. They do this based on a score that represents how sick someone is and how quickly the person needs a new liver. The score for children is known as the pediatric end-stage liver disease, or PELD, score.

Organs are also assigned based on which person on the waiting list is the best match for the organ donated. That means that the organ is the right size for the person’s body and the donor has the same blood type as the recipient.

Your child may have to wait to find a liver that is a good match. Unfortunately, no one knows how long that wait will be. It could be just a few days, or it could be years.

Waiting can be hard. It can help to find a support group of parents whose children have had transplants or are waiting for transplants. To find a group in your area, talk to your child’s doctor or the social worker at the hospital, or check online.

Getting the Call

When a liver becomes available that is a good match, your family will be notified by phone or pager and you will need to go to the hospital right away. Because this could happen at any time, you should always be prepared.

When you get to the hospital, the transplant team will prepare your child for surgery. They may do several tests to ensure that the liver is a good match. Once the team decides that everything is OK, your child will be moved to an operating room.

In the operating room, your child will be given anesthesia, so that he or she will sleep through the surgery and not feel anything. The doctors will make an incision in your child’s belly, through which they will remove the sick liver and put in the donated liver. Blood vessels and bile ducts from the new liver will be attached to the other organs. The incision will then be stitched closed.

Most liver transplant surgeries take between 6 and 10 hours. Someone on the transplant team will keep you informed about how the procedure is going while you wait.

Recovery

Right after the surgery, your child will be moved to a room in the pediatric intensive care unit (PICU). You should be able to be with your child at this time. Your child will be given pain medicine and might be resting when you arrive.

How long a child stays in the PICU depends on his or her condition. Generally, the stay is just a few days. When ready, your child will be transferred from the PICU to a special unit in the hospital for transplant patients. There, the transplant team will care for and closely monitor your child. Most kids don’t have any problems after the surgery, but bleeding, infection, and other problems can happen.

Most children stay in the hospital for a couple of weeks after surgery. During this time, they and their families learn how to care for the new liver. Be sure you understand all of the doctors’ instructions, because your child will need to follow them carefully.

When the transplant team agrees that your child is ready, he or she will be discharged from the hospital. In the weeks that follow, though, your child will return to the hospital many times so that the doctors can continue to make sure that everything is going well.

Possible Complications

One of the most common problems after transplant surgery is rejection. Rejection is the body’s normal reaction to a foreign substance. Usually, this reaction is beneficial. For example, it’s the way the body defends itself against harmful germs.

In the case of a liver transplant, the body doesn’t recognize the new liver and doesn’t know that the liver is helpful. As a result, the immune system tries to attack it. Medicines (called immunosuppressants) help to control this reaction. In a sense, they trick the body into accepting the new organ.

Although the risk of rejection is greatest in the first few weeks after transplant surgery, the body never completely accepts a new liver and so anti-rejection medications must be taken for life. The transplant team will decide which medicines are best for your child and these must be taken exactly as instructed.

Anti-rejection medications can cause some unwanted side effects, such as fever, headache, nausea, tiredness, and irritability. Be sure to report these and any other reactions to your doctor. Unfortunately, these medicines also leave kids vulnerable to certain infections. This risk is greatest right after surgery, and your child will be given other medications to help reduce this risk. When possible, your child should avoid people who are sick to reduce the risk of infection.

Usually, the amount of immunosuppressants a person takes is gradually reduced as the body gets used to the new organ and the risk of rejection decreases. Rarely, the body refuses to accept the new organ and another liver transplant is necessary.

Staying Healthy for Life

Almost all children who have liver transplants go on to live normal, healthy lives after they recover from the surgery. Regular checkups are needed to monitor for complications. At first, these checkups will happen often (perhaps weekly). Gradually, they’ll become less frequent and eventually might be needed only once or twice a year.

After transplant surgery, you can help your child by making sure that he or she takes all medications as directed. Also, encourage your child to get plenty of exercise and eat well. These healthy behaviors will help to ensure that the new liver stays healthy for life.