Transplantation information

A liver transplant is an operation performed to replace a diseased liver with a healthy one from another person. An entire liver may be transplanted, or just a section. The liver may come from an organ donor, or from a family member who is willing to donate a part of their liver and is a suitable candidate to donate.

Why is a liver transplant recommended?

A liver transplant is recommended for children who have serious liver dysfunction and will not be able to live without having the liver replaced. The most common liver disease in children for which transplants are done is biliary atresia. Other diseases may include Alagille's Syndrome, alpha-1-antitrypsin deficiency, Wilson's disease, hepatitis, and hemochromatosis.

How many children in the United States need liver transplants?

According to the latest statistics from the Organ Procurement and Transplantation Network, 487 children were waiting for a liver transplant in the United States on August 7, 2015, including:

• 235 in the newborn to 5 years age group
• 96 in the 6 to 10 years age group
• 156 in the 11 to 17 years age group

Where do transplanted organs come from?

The majority of livers that are transplanted come from deceased organ donors. Organ donors are adults or children who have become critically ill (often due to an accidental injury) and will not live as a result of their illness or injury. An adult donor may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the United States. This type of transplant is called a cadaveric transplant.

A child receiving a transplant may either get a whole liver, or a segment of one. If an adult liver is available and is an appropriate match for two children on the waiting list, the donor liver can be divided into two segments and each part is transplanted.

Living family members may also be able to donate a section of their liver. This type of transplant is called a living-related transplant. Children receiving a partial liver seem to do as well as those who receive a whole liver. Relatives who donate a portion of their liver can live healthy lives with the segment that remains.

According to the United Network for Organ Sharing, in the first six months of 1999, 217 children received a liver from a cadaveric donor, while 28 children received a liver from a living-related donor.

How are transplanted organs allocated?

The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung, and cornea.

UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The medical team that currently follows your child is responsible for sending the data to UNOS and updating them as your child's condition changes.

Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant. Once UNOS receives the data from local hospitals, people waiting for a transplant are placed on a waiting list and given a "status" code. The people in most urgent need of a transplant are placed highest on the status list and are given first priority when a donor liver becomes available.

When a donor organ becomes available, a computer searches all the people on the waiting list for a liver and sets aside those who are not good matches for the available liver. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If that person is not a good candidate, for whatever reason, the next person is considered, and so forth. Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographical distance between the donor and the recipient.

How is my child placed on the waiting list for a new liver?

An extensive evaluation must be completed before your child can be placed on the transplant list. Testing includes:

• Blood tests.
• Diagnostic tests.
• Psychological and social evaluation of the child (if old enough) and the family.

Tests are done to gather information that will help determine how urgent it is that your child is placed on the transplant list, as well as ensure the child receives a donor organ that is a good match. These tests include those to analyze the general health of the body, including the child's heart, lung and kidney function, the child's nutritional status and the presence of infection. Blood tests will help improve the chances that the donor organ will not be rejected. These tests may include:

• Liver enzymes - Levels of liver enzymes can alert physicians to liver damage or injury, since the level of enzymes in the bloodstream increases under these circumstances.
• Bilirubin - Bilirubin is produced by the liver and is excreted in the bile. Elevated levels of bilirubin often indicate an obstruction of bile flow or a defect in the processing of bile by the liver.
• Albumin, total protein and globulin - Below-normal levels of proteins made by the liver are associated with many chronic liver disorders.
• Clotting studies, such as prothrombin time (PT) and partial thromboplastin time (PTT) - Tests that measure the time it takes for blood to clot are often used prior to liver transplantation. Blood clotting requires vitamin K and proteins made by the liver. Liver cell damage and bile obstruction can both interfere with proper blood clotting.

Other blood tests will help improve the chances that the donor organ will not be rejected. They may include:

• Your child's blood type - Each person has a specific blood type: type O, A, B, or AB. When receiving a transfusion, the blood received must be a compatible type with your child's type of blood, or an allergic reaction will occur. The same allergic reaction will occur if the blood contained within a donor organ enters your child's body during a transplant. Allergic reactions can be avoided by matching the blood types of your child and the donor.
• Kidney, heart, and other vital organ function tests - These tests determine whether the condition your child is suffering from can be cured with liver transplant. Some conditions may require multi-organ transplantation or may not be cured at all.
• Viral studies - These tests determine if your child has antibodies to viruses that may increase the likelihood of complications while your child is receiving the immune system-suppressing medications to prevent rejection, such as cytomegalovirus (CMV) or Ebstein-Barr virus (EBV).

The diagnostic tests that are performed are extensive, but necessary to understand the complete medical status of your child. The following are some of the other tests that may be performed, although many of the tests are decided on an individual basis:

• Abdominal ultrasound (Also called sonography.) - a diagnostic imaging technique which uses high-frequency sound waves and a computer to create images of blood vessels, tissues and organs. Ultrasounds are used to view internal organs as they function and to assess blood flow through various vessels.
• Liver biopsy - a procedure in which tissue samples are removed (with a needle or during surgery) from the liver for examination under a microscope.

The transplant team will consider all information from interviews, your child's medical history, physical examination, and diagnostic tests in determining whether your child can be a candidate for liver transplantation.

After the evaluation and your child has been accepted to have a liver transplant, your child will be placed on the United Network for Organ Sharing (UNOS) list.

The liver transplant team:

The group of specialists involved in the care of children who are undergoing a transplant procedure is often referred to as the "transplant team." Each individual works together to provide the best chance for a successful transplant. The liver transplant team consists of:

• Transplant surgeons - physicians who specialize in transplantation and who will be performing the surgery. The transplant surgeons coordinate all team members. They follow your child before the transplant and continue to follow your child after the transplant and after discharge from the hospital.
• Transplant nurse coordinator - a nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide patient education and coordinate the diagnostic testing and follow-up care.
• Social workers - professionals who will provide support to your family and help your family deal with many issues that may arise including lodging and transportation, finances and legal issues. They can also help coordinate alternative means for school, so that your child does not get behind.
• Dietitians - professionals who will help your child meet his/her nutritional needs before and after the transplant. They will work closely with you and your family.
• Child psychologist - a psychologist who specializes in children will assist both the family and staff to cope with liver disease and transplant.
• Other team members - several other team members will evaluate your child before transplantation and provide follow-up care, as needed. These include, but are not limited to, the following:
  • Pharmacists
  • Anesthesiologists
  • Respiratory therapists
  • Cardiologists
  • Hematologists
  • Urologists
  • Nephrologists
  • Infectious disease specialists
  • Physical therapists
  • Pastoral care
  • Lab technicians
  • Child life specialists

How long will it take to get a new liver?

There is no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ. If no living-related donor is available, it may take months or years on the waiting list before a suitable donor organ is available. During this time, your child will have close follow-up with their physician and the transplant team. Various support groups are also available to assist you during this waiting time.

How are we notified when a liver is available?

You will notified by phone or pager that an organ is available. You will be told to come to the hospital immediately so your child can be prepared for the transplant.

What is involved in liver transplant surgery?

Once an organ becomes available to your child, you and your child will be immediately called to the hospital. This call can occur at any time, so you should always be prepared to go to the hospital, if needed. Once at the hospital, the child will have some more final blood work and tests to confirm the match of the organ.

The child will then go to the operating room. The transplant surgery may require several hours, but will vary greatly depending on each individual case. During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.

Post-operative care for liver transplant:

After the surgery, your child will go to the intensive care unit (ICU) to be monitored closely. The length of time your child will spend in the ICU will vary based on your child's unique condition. After your child is stable, your child will be sent to the special unit in the hospital that cares for liver transplant patients. Your child will continue to be monitored closely. You will be educated on all aspects of caring for your child during this time. This will include information about medications, activity, follow-up, diet and any other specific instructions from your child's transplant team.

What is rejection?

Rejection is a normal reaction of the body to a foreign object. When a new liver is placed in a person's body, the body sees the transplanted organ as a threat and tries to attack it. The immune system makes antibodies to try to kill the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to successfully live in a new body, medications must be given to trick the immune system into accepting the transplant and not thinking it is a foreign object.

Rejection symptoms:

The following are the most common signs and symptoms of rejection. However, each child may experience symptoms differently. Symptoms may include:

• Fever
• Jaundice (yellow skin or eyes)
• Dark urine
• Itching
• Abdominal swelling or tenderness
• Fatigue
• Irritability
• Headache

Your child's transplant team will instruct you on who to call immediately if any of these symptoms occur.

Rejection prevention

Medications must be given for the rest of the child's life to fight rejection. Each child is unique and each transplant team has preferences for different medications. Some of the anti-rejection medications most commonly used include the following:

• Tacrolimus
• Prednisone

The doses of these medications may change frequently, depending upon your child's response. Because anti-rejection medications affect the immune system, children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection. Blood tests to measure the amount of medication in the body are done periodically to make sure your child does not get too much or too little of the medications. White blood cells are also an important indicator of how much medication your child needs.

What about infection?

This risk of infection is especially great in the first few months because higher doses of anti-rejection medications are given during this time. Your child will most likely need to take medications to prevent other infections from occurring. Some of the infections your child will be especially susceptible to include oral yeast infection (thrush), herpes and respiratory viruses.

Long-term outlook for a child after a liver transplant:

Living with a transplant is a life-long process. Medications must be given that trick the immune system so it will not attack the transplanted organ. Other medications must be given to prevent side effects of the anti-rejection medications, such as infection. Frequent visits to and contact with the transplant team are essential. When the child becomes old enough, he will need to learn about anti-rejection medications, what they do, the signs of rejection and everything else the parents have learned so he can eventually care for himself independently.

Every child is unique and every transplant is different. Results continually improve as physicians and scientists learn more about how the body deals with transplanted organs and search for ways to improve transplantation.