Liver Transplant for Children

What is a liver transplant for children?

A liver transplant is surgery to replace a diseased liver with a healthy liver from another person.

The new liver may come from an organ donor who has just died. A liver transplant may also come from a healthy living person. This is called a living donor. A living donor may be a family member or someone who is not related to your child but has a matching blood type.

People who donate part of their liver can have healthy lives with the liver that is left. The liver is the only organ in the body that can replace (regenerate) lost or damaged tissue.

The donor’s liver will soon grow back to normal size after surgery. The part that your child receives as a new liver will also grow to normal size in a few weeks.

Why might my child need a liver transplant?

A liver transplant is recommended for children who have serious liver problems and will die without a new liver. The most common liver disease in children who need transplants is biliary atresia. This is a rare disease of the liver and bile ducts that occurs in newborns.

Other conditions may include:

• Liver cancer and other liver tumors

• Sudden or acute liver failure because of an autoimmune disease, unknown causes, or an overdose of medicine, such as acetaminophen

• Other genetic and hereditary liver diseases 

• Conditions present at birth, such as Alagille syndrome or cholestatic disorders

• Viral hepatitis

• A buildup of too much iron in the body, which can damage organs. This is called hemochromatosis.

• Alpha-1 antitrypsin, an inherited condition that raises the risk for liver disease

What are the risks of a liver transplant for a child?

Possible complications from liver transplant surgery may include:

• Rejection of the new liver by the body’s immune system

• Bleeding

• Infection

• Blocked blood vessels to the new liver

• Leakage of bile or blocked bile ducts

• The new liver not working for a short time right after surgery

Rejection is a normal reaction of the body’s immune system, or disease-fighting system, to a foreign object or tissue. When a new liver is placed in your child’s body, the immune system thinks it is a threat and attacks it.

To help the new liver survive in your child’s body, your child must take anti-rejection medicines. These are called immunosuppressants. These medicines weaken the immune system’s response. Your child must take these medicines for the rest of their life.

How do I get my child ready for a liver transplant?

If your child’s healthcare provider thinks they may be a good candidate for a liver transplant, they will refer your child to a transplant center for evaluation. Transplant centers are located in certain hospitals throughout the U.S.

Your child will meet the transplant center team. The team will decide whether to place your child’s name on a national transplant waiting list. The transplant center team will include:

• A transplant surgeon

• A transplant provider specializing in treating the liver, called a hepatologist

• Transplant nurses

• A social worker

• A psychiatrist or psychologist

• Other team members, such as a dietitian, a chaplain, or an anesthesiologist

The transplant evaluation process

You child must have a full evaluation before they can be placed on the transplant waiting list. The transplant center team will do many tests, including:

• Psychological and social evaluation. These tests are done on your child, if they are old enough, and your family.

• Blood tests. These tests are done to help find a good donor match and assess your child’s priority on the waiting list. They can also help improve the chances that your body won’t reject the donor liver.

• Diagnostic tests. Tests may be done to check your child’s liver and general health. These tests may include X-rays, ultrasounds, a liver biopsy, and dental exams.

The transplant center team will look at all of your child’s test results and information. Each transplant center has rules about who can have a liver transplant.

Your child may not be able to have a transplant if they:

• Have a current or chronic infection that can’t be cured with a transplant or may compromise a healthy liver transplant

• Have metastatic cancer. This is cancer that has spread from its main location to one or more other parts of the body.

• Have severe heart problems or other health problems

• Have a serious condition besides liver disease that would not get better after a transplant

Getting on the waiting list

If your child is accepted as a transplant candidate, they will be placed on a national transplant waiting list. People who most urgently need a new liver are put at the top of the list. Your child may be on the waiting list only a few days or weeks before receiving a donor organ. If no living related donor is found, your child may have to wait months or years. During this time, your child will have close follow-up with their healthcare provider and the transplant team. Support groups are also available to help you during this waiting time.

You will be contacted when a liver is available because a donor has died. You will need to go to the hospital right away so your child can get ready for surgery.

If the liver is from a living donor, the surgery will be planned in advance. Your child and the donor will have surgery at the same time. The donor must be in good health. They must have a blood type that is a good match with your child’s blood type. The donor will also take a psychological test. This is to be sure they are comfortable with this decision.

What happens during liver transplant surgery for a child?

Once a liver is available for your child, you and your child will be told to go to the hospital right away. This call can occur at any time, so you should always be ready to go to the hospital. At the hospital, your child will have some more final blood tests to be sure the liver is a match.

Your child will then go to into surgery. The transplant may take 6 to 12 hours. This will vary depending on your child’s case. During the surgery, a member of the transplant team will let you know how the surgery is going.

Liver transplant surgery requires a hospital stay. Procedures may vary. It depends on your child’s condition and the provider’s practices.

Generally, a liver transplant follows this process:

1. Your child will be asked to remove their clothing and given a gown to wear.

2. An IV (intravenous) line will be started in your child’s arm or hand. Other tubes or catheters will be put in the neck and wrist. Or they may be put under your child’s collarbone or in the groin area. These are used to check your child’s heart and blood pressure, and to get blood samples.

3. Your child will be placed on their back on the operating table.

4. A catheter will be put into your child’s bladder to drain urine.

5. Your child will be given general anesthesia so that they are in a deep sleep. After your child is sedated, the anesthesiologist will put a tube into your child’s lungs. This is so that your child’s breathing can be helped with a machine called a ventilator. The anesthesiologist will keep checking your child’s heart rate, blood pressure, breathing, and blood oxygen level during the surgery.

6. The skin over the surgical site will be cleaned with a sterile solution.

7. The surgeon will make a cut or incision just under the ribs on both sides of your child’s belly. The incision will extend straight up for a short distance over the breastbone.

8. The surgeon will carefully separate the diseased liver from the nearby organs and structures.

9. The attached arteries and veins will be clamped to stop blood flow into the diseased liver.

10. Different surgery methods may be used to remove the diseased liver and implant the donor liver. The method used will depend on your child’s specific case.

11. The diseased liver will be removed after it has been cut off from the blood vessels.

12. The surgeon will check the donor liver before implanting it in your child’s body.

13. The donor liver will be attached to your child’s blood vessels. Blood flow to the new liver will be started. The surgeon will check for any bleeding where there are stitches.

14. The surgeon will attach the new liver to your child’s bile ducts.

15. The surgeon will close the incision with stitches or surgical staples.

16. A drain may be placed in the incision site to reduce swelling.

17. A sterile bandage or dressing will be applied.

What happens after a liver transplant for a child?

After the surgery, your child will go to the intensive care unit (ICU) to be watched closely. The length of time your child will spend in the ICU will vary. It's based on your child's condition.

Possible problems after a liver transplant include bleeding, blood clots, damage to the bile ducts, failure of the donor liver, and infection, and rejection of the donor liver.

After your child is stable, they will be sent to the special hospital unit that cares for liver transplant patients. Your child will still be watched closely. During this time, you will learn all about caring for your child. This will include information about medicines, activity, follow-up, diet, and any other instructions from your child's transplant team.

Rejection

Your child's body may try to reject the new liver. Rejection is a normal reaction of the body’s immune system, or disease-fighting system, to a foreign object or tissue. When a new liver is placed in your child’s body, the immune system thinks it is a threat and attacks it.

To help the new liver survive in your child’s body, your child must take anti-rejection medicines. These are called immunosuppressants. These medicines weaken the immune system’s response. Your child must take these medicines for the rest of their life.

Rejection is more likely to occur in the weeks right after surgery; however, rejection can occur any time that anti-rejection medicines are not able to control the immune system response.

Symptoms of rejection

It may not always be easy to tell when rejection occurs. High liver enzyme levels in the blood may be the first sign of rejection.

It is important for both you and your child, when they are old enough, to know the signs and symptoms of rejection. Symptoms may vary. Some common symptoms of rejection may include:

• Fever

• Yellowish skin or eyes (jaundice)

• Dark urine

• Light-colored stools

• Itching

• Swollen or sore belly

• Extreme tiredness or fatigue

• Feeling grouchy or irritable

• Headache

• Upset stomach or nausea

The symptoms of rejection may seem like other health problems. Your child's transplant team will tell you who to call right away if any of these symptoms occur.

Preventing rejection

Your child must take anti-rejection medicines for the rest of their life. The doses of these medicines may change often, depending on your child's response. Each child may react differently to medicines, and each transplant team may prefer different medicines based on their own experiences.

Your child will have blood tests from time to time. These will measure the amount of medicine in your child’s body. This is to make sure your child gets the right amount of medicine. White blood cells are also an important sign of how much medicine your child needs.

Infection

Anti-rejection medicines affect the immune system. So children who have a transplant are at greater risk for infections. This risk is very high in the first few months after surgery. That’s because higher doses of anti-rejection medicines are given during this time.

For the first few months after surgery, your child should avoid crowds or anyone who has an infection.

Your child will most likely need to take medicines to prevent other infections from occurring. Some of the infections your child will be at greater risk for include:

• Thrush or oral yeast infection

• Respiratory viruses

• CMV (cytomegalovirus)

• EBV (Epstein-Barr virus)

• Herpes

Living with a liver transplant

Living with a liver transplant is a lifelong process. Your child will have to take anti-rejection medicines so that the immune system won’t attack the new liver. Other medicines must be given to prevent side effects of the anti-rejection medicines. These side effects include infections. It’s important that you and your child keep in close contact with the transplant team.

When your child is old enough, they will need to learn all about anti-rejection medicines and what they do. Your child will have to learn the signs of rejection, and everything else you have learned. This is important so that your child can one day practice self-care without help.

Next steps

Before you agree to the test or the procedure for your child, make sure you know:

• The name of the test or procedure

• The reason your child is having the test or procedure

• What results to expect and what they mean

• The risks and benefits of the test or procedure

• When and where your child is to have the test or procedure

• Who will do the procedure and what that person’s qualifications are

• What would happen if your child did not have the test or procedure

• Any alternative tests or procedures to think about

• When and how you will get the results

• Who to call after the test or procedure if you have questions or your child has problems

• How much you will have to pay for the test or procedure