What is liver transplantation?
Liver transplantation is an operation performed when a person’s liver health is so poor that it is considered life-threatening. Transplantation is performed by surgically removing the diseased liver and replacing it with part of a liver or a whole liver from another person. The new liver comes from a legally brain-dead person or from an adult who donates part of their liver. The person who receives the transplant needs to take medication(s) for a long time to prevent their body from rejecting the new liver.
Why might a child might need a liver transplant?
Children can suddenly develop liver disease (called acute disease) or can have liver disease that persists for months or years (called chronic disease). Either form of disease can cause significant damage to the liver and require a liver transplantation. Although many chronic conditions can be treated with medications, sometimes the liver might still not work well enough, even with medication.
Causes of acute liver failure include:
- Infections such as hepatitis A or B virus, Epstein Barr virus, cytomegalovirus, adenovirus, and many others
- Medications that are toxic or poisonous to the liver, which can be prescription drugs, excess intake of over-the-counter medications like Tylenol or acetaminophen, recreational drugs, and even some herbal remedies
- Genetic causes
- Sometimes, the cause of liver failure is unknown
Chronic liver disease can occur for many reasons:
- In babies with biliary atresia (absence of open ducts to drain bile from the liver to the intestine)
- Chronic viral hepatitis (long-term inflammation of the liver caused by a virus), autoimmune liver disease (when a person’s immune system abnormally makes antibodies that attack their own liver), or genetic disorders
Certain liver tumors also can be treated by transplantation.
How many children need liver transplantation?
In the US, there are about 6,000–8,000 liver transplants performed every year. This number changes a little each year. Of these, about 400–500 liver transplants (5%–8% of total liver transplants) are performed in children.
You can find more up-to-date information about liver transplantation at the United Network for Organ Sharing (UNOS) patient website.
What are the symptoms of liver failure?
Symptoms of acute liver failure include:
- Yellow eyes and yellow skin (called jaundice)
- Bleeding due to poor blood clotting
- Eventually, lethargy, confusion, and even coma
Symptoms of chronic liver disease include all the above symptoms for acute liver failure, as well as:
- Poor growth
- Severe itching
- A swollen or bloated belly caused by fluid in the abdomen
- Enlarged spleen
- Bleeding from swollen veins in the esophagus (the food tube connecting the mouth to the stomach), which causes the child to throw up blood or pass black-colored stool
How is your child approved and listed for a liver transplant?
Transplanting your child’s liver is a major step. The decision to transplant is made when living with the diseased liver is more of a risk to your child’s wellbeing than living with a transplanted liver. If your child needs a liver transplant, they will undergo extensive evaluation that includes lab tests, images including ultrasound and CT scans, echocardiography, and discussions with social workers, dietitians, pharmacists, psychologists, and anesthesiologists.
Once all evaluations are completed, a clinical summary is provided to the hospital’s liver transplant committee, which approves the liver transplantation. The patient’s details are then sent to United Network of Organ Sharing (UNOS), and the child is put on a national waitlist. The order of the waitlist is based on disease severity—children with acute liver failure are the sickest and are placed at the top of the list.
Disease severity is measured using Pediatric End-Stage Liver Disease (PELD) score for children <12 years old and Model for End-Stage Liver Disease (MELD) score for children >12 years old. The scoring system is designed to ensure fairness. In specific situations, patients may be given additional points that are approved by UNOS to increase their priority on the transplantation waitlist.
How are decisions made about donor livers?
UNOS is a nonprofit scientific national organization that maintains the national waitlist for donor organs. Its goals are fairness to all and good outcomes for as many people as possible.
Patients are evaluated by their transplant center, and depending on how sick they are and the probability of their disease being successfully treated with transplantation, UNOS matches them to donor organs as they become available. Patients are treated equally, regardless of ethnicity, gender, or economic status. In the case of living donation, a healthy adult who wants to donate undergoes testing to determine if they are a suitable candidate.
Your child’s liver doctor will provide more information about the options for your child.
How is a liver transplant performed, and what are the short-term risks?
When the donor is alive, one group of surgeons will remove part of the healthy liver from the donor, while at the same time, another group removes the diseased liver from the child. When the donor is deceased, the child is admitted to the hospital while the liver is transported to the hospital.
The healthy liver is placed in the child’s abdomen, and the surgeon reconnects all of the blood vessels and bile ducts to allow the new liver to work properly. The child is then given medications to prevent rejection of the newly transplanted liver. In uncomplicated cases, the child may be in intensive care for 2–3 days and in the hospital for 7–14 days.
The main risks immediately after surgery are bleeding, clotting of the artery to the liver, and poor function of the new liver. Other risks may depend on your child’s diagnosis. Your child’s liver doctor will go over these risks with you.
What is life like after a liver transplant?
Children who receive a liver transplantation are expected to live a normal life. However, they will need to take daily medication to prevent rejection of the liver. Regular doctor visits to monitor liver function and medication side effects are very important. Your child will initially require frequent ultrasound imaging to ensure proper blood flow and bile drainage in the new liver. Lab and clinic visits eventually become less frequent over time. Special precautions are necessary to avoid infections, including eating a healthy diet.
Long-term risks are rejection of the liver, infections, and an unusual cancer of the lymph glands called post-transplant lymphoproliferative disease. Most of these complications are treatable if discovered early, so good medical follow-up is important. One of the important causes of long-term rejection is not taking anti-rejection medications as indicated, particularly when your child enters teen years. It is thus critical that when transplanted children become teenagers, they learn how to take on the responsibility of caring for themselves and their transplanted organs.
Your child’s care team will include medical liver doctors, surgeons, nurses, social workers, psychiatrists, psychologists, and dietitians. You and your child will be supported before, during, and for a long time after the liver transplantation.
- Liver transplantation is taking a deceased person’s liver or part of a living person’s liver and placing it into a patient whose own liver no longer works properly.
- A person’s own liver can stop working suddenly (called acute liver failure) or over a longer time (called chronic liver failure). In infants and children, there are several causes.
- The United Network of Organ Sharing (UNOS) is a national organization that matches donor organs to people who need them.
Author: Kadakkal Radhakrishnan, MD
Editor: Christine Waasdorp Hurtado, MD