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 they 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.
Children and adults also can receive a liver transplant from a living donor. This person donates a piece of their liver to the person needing a new liver. The living donor’s liver expands to normal size after about 6 weeks. In kids, the donated liver piece will grow as the child grows.
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:
- liver specialists (hepatologists)
- transplant coordinators
- social workers
- child life specialists
- advanced practice providers
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:
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 for a liver transplant, 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. The family may also discuss if living donation is an option for their child. The transplant team will guide you on finding the right living donor for your child.
Your child will have to wait to find a liver that is a good match. The need for new livers is far greater than the number donated. The children and adults with the sickest livers will get a liver transplant faster. Finding a living donor also might help to get your child a liver transplant more quickly.
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, they will be ready for transplant surgery when the time comes. Help your child:
- eat healthy foods
- take all medicines as directed
- go to all medical appointments
Tell your doctor and the transplant center right away if there 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 will run a few tests to be sure that your child is healthy enough for the transplant. If everything with your child and the new liver checks out, 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 your child’s blood vessels and bile ducts. Then, they stitch the incision closed.
Most liver transplant surgeries last between 10–12 hours. Someone on the transplant team and operating room 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 their 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 2–3 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, as 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?
Problems related to the surgery can happen, such as bleeding, infection, blood vessels clotting, and leaking from the bile ducts.
Another possible problem 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 rarely completely accepts the new liver. So anti-rejection medicines are taken for life.
Usually, the amount of immunosuppressant medicine 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.
What Else Should I Know?
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 them to get plenty of rest, exercise regularly, and eat well.
Also, watch your child for signs of infection or rejection, including:
- weight loss
- poor appetite
- stomach pains
- yellowing of the eyes or skin
Call your doctor right away if these or any other problems happen.
Your child will have regular checkups and lab tests so doctors can watch for problems. At first, these visits might happen weekly. You'll go less often over time. Eventually, your child will be checked and get lab tests every 2–3 months.
How Can Parents Help?
Having a serious condition can be hard for kids. Surgery and immunosuppressant medicine 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. A transplant mental health professional is available and can help your child and family cope with the stresses of the transplant.
- Be there when your child wants to talk.
- If your child needs more support, talk with your transplant team. The psychologist on the team can help.
- 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.
When you need help, talk to your transplant team. They are there to help support you, your child, and your family.
You also can find more information and support online at: