When Your Child Needs a Liver Transplant

What Is a Liver Transplant?

A liver transplant is a surgery in which doctors remove a person's sick liver and replace it with a healthy donor liver.

Transplants are done when a child's liver does not work well and he or she won't survive without a new one. Doctors sometimes call this liver failure. Doctors only recommend a liver transplant after they have tried all other treatments to save the child's liver.

Most organ donors are adults and children who have agreed (or their guardians have agreed) to donate their organs after they die.

If a child doesn't need an entire new liver, sometimes a living person, like a parent, can donate part of a liver. 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 months of donating the tissue because livers grow new cells on their own (called regeneration).

What Happens Before a Liver Transplant?

If your child needs a liver transplant, your doctor will refer you to a transplant center. There, you'll meet the members of the transplant team, which usually includes:

• surgeons
• liver specialists (hepatologists)
• a transplant coordinator
• dietitians
• psychologists
• social workers

The health care team will check to make sure that your child is healthy enough to have surgery and take the medicines needed after it. The team will do tests such as:

• blood tests: to determine blood type
• imaging tests: such as an abdominal ultrasound or CT scan

The doctor also might do a biopsy, removing a tiny piece of tissue from the liver to examine under a microscope.

The transplant evaluation lets the team learn as much about your child as possible. It's also a time for you and your child to learn about what will happen before, during, and after the transplant. The transplant team is there to provide information and support. Be sure to ask if you don't understand something.

If the transplant team decides your child is a good candidate, the next step is to find a donor. Your child's name will go on an organ waiting list. This list has the names of everyone who is waiting for a liver or other organs. A living donor evaluation is done when someone is interested in donating a piece of liver.

Your child might have to wait to find a liver that is a good match. The need for new livers is far greater than the number donated, so this can take a long time.

You'll stay in close touch with the doctors and the rest of the health care team. Make sure they know how to reach you at all times. When a liver is available, you'll need to move quickly. Keep a bag packed and be ready to go to the transplant hospital at a moment's notice.

While you wait for a transplant, keep your child as healthy as possible. That way, he or she will be ready for transplant surgery when the time comes. Help your child:

• eat healthy foods
• take all medicines as directed
• keep all medical appointments

Tell your doctor and the transplant center right away if is any change in your child's health.

What Happens During Liver Transplant Surgery?

When you get to the hospital, the transplant team will prepare your child for surgery. They may run a few tests to be sure that the new liver is a good match. Then, your child goes to an operating room.

In the operating room, your child will get anesthesia to sleep through the operation. The surgeon makes an incision (cut) in the belly and removes the sick liver. The new liver is placed, and the surgeon attaches blood vessels and bile ducts from the new liver to the other organs. The incision will then be stitched closed.

A child who gets part of a new liver will regenerate enough liver tissue to have a normal-sized liver within a few weeks of the transplant.

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

What Happens After Liver Transplant Surgery?

After liver transplant surgery, your child will go to the pediatric intensive care unit (PICU). You can be with your child at this time. Your child will get pain medicine and might be resting when you arrive.

How long your 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 to a special unit for transplant patients. There, the transplant team will care for and closely watch your child.

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 the doctors' instructions, because your child will need to follow them carefully.

In the weeks after your child goes home, you'll return to the hospital many times so that the doctors can make sure that everything is going well.

What Problems Can Happen?

Most kids don't have any problems after the surgery, but bleeding, infection, and other problems can happen.

One of the most common problems after transplant surgery is rejection. Rejection happens because the body doesn't recognize the new liver and doesn't know that it is helpful. So the immune system tries to attack it.

Medicines (called immunosuppressants, or anti-rejection medicines) help to control this reaction. In a sense, they trick the body into accepting the new liver. Taking them can make your child more likely to get infections, especially in the days right after surgery. So keep your child away from sick people, and have everyone at home wash their hands well and often.

The risk of rejection is greatest in the first few weeks after transplant surgery. But the body never completely accepts the new liver. So anti-rejection medicines are taken for life.

Usually, the amount of immunosuppressants taken is reduced as the body gets used to the new liver. Rarely, the body refuses to accept the new liver and another transplant is needed.

Looking Ahead

Almost all kids who have liver transplants live normal, healthy lives after they recover from surgery.

It's very important for you and your child to do everything possible to keep the new liver healthy. Make sure that your child takes all medicines as directed, and encourage him or her to get plenty of rest, exercise regularly, and eat well.

Also, watch your child for signs of infection or rejection, including:

• fever
• tiredness
• trouble breathing
• vomiting
• weight gain
• weight loss
• poor appetite

Call your doctor right away if these or any other problems happen.

Your child will have regular checkups so doctors can watch for problems. At first, these visits might happen weekly. You'll go less often over time. Eventually, checkups might be needed only once or twice a year.

How Can I Help My Child?

Having a serious condition can be hard for kids. Surgery and immunosuppressant therapy can add to the stress. Talk to your child about these changes and how you will work them into your routine. Make sure to find time to do fun things together with family and friends.

For teens, immunosuppressant therapy can be a challenge. These medicines can cause:

• more acne
• weight gain
• excess facial and body hair in women (called hirsutism)

These side effects are a major reason why teens are at risk for not taking their medicines after a transplant. This can be dangerous and even lead to rejection of the new liver. So be sure to talk about the importance of taking all medicines as directed.

To help:

• Be there when your child wants to talk.
• If your child needs more support, make an appointment with a therapist or counselor. A psychologist is part of the transplant team.
• Find a support group. They're a great way for kids and teens to relieve stress and connect with others who are going through similar challenges. Online resources include Transplant Living.
• Get support for yourself too. It can be a huge relief to talk about your feelings with other people who know what you're going through. Ask the transplant care team if they know of support groups for families.