Pediatric Liver Transplant | FAQs

The conditions that most often require a liver transplant include:

• Cholestatic disorders such as Alagille syndrome, biliary atresia, idiopathic cholestasis, Primary Sclerosing Cholangitis and TPN-associated liver disease
• Metabolic disorders such as citrullinemia, glycogen storage disease, hemochromatosis, OTC deficiency or tyrosinemia
• Acute liver failure from viral infection, drug toxicity or autoimmune disorders
• Cirrhosis from autoimmune or neonatal hepatitis, or cryptogenic cirrhosis
• Tumors such as hepatoblastoma or hepatocellular carcinoma
• Other disorders such as Budd-Chiari syndrome, Abernathy's syndrome and other diseases that don't fall into a specific category

A liver transplant is the only hope for patients with advanced liver disease and for people with acute liver failure. Unlike kidneys, which can be supported with dialysis, there are no medical options for treating a failing liver.

The number of children awaiting a liver transplant is constantly changing. The United Network for Organ Sharing (UNOS) provides up-to-the-minute data on transplant waiting list activity and transplantation statistics. UNOS data are based on numbers reported by the Organ Procurement and Transplantation Network, which maintains the only national patient waiting list. These organizations are the best sources of information regarding the number of candidates on the waiting list.

Most transplanted livers come from deceased donors—people who die after an accident or illness. When an organ is received from a deceased donor, it is called a “deceased donor” transplant. Sometimes, a deceased donor liver can be divided into two segments, with each segment transplanted into a waiting child. This strategy helps liver transplant surgeons optimize the availability of donor livers and minimize transplant patients’ waiting times. Children who receive liver segments seem to do as well as those who receive whole livers.

A living relative or family friend may be able to donate a segment of his or her liver. This type of transplant is called a “living donor” transplant. Soon after surgery, the remaining liver tissue regenerates, and the organ returns to its normal size. Living donors can live healthy lives following surgery. Cincinnati Children’s provides a Living Liver Donor program for families and relatives interested in donating to a loved one.

Organ donation and transplantation save over 28,000 lives a year, and the need for donors is great. You can learn more and sign up when you visit organdonor.gov.

The most important factors in choosing a liver transplant center for your child are the team’s experience and expertise. You should be looking for a program that performs a high volume of transplants each year, with experience in complex pediatric liver transplant surgeries.

At Cincinnati Children’s, we are very proud of our Liver Transplant Center, which is one of the largest in the country. Our hepatologists, transplant surgeons, nutritionists, transplant pharmacists, nurse care managers, interventional radiologists, pathologists and other pediatric subspecialists have worked together for many years and represent a broad diversity of knowledge.

Our one-year post-transplant survival rate is 94.3%, higher than the expected average, per the Scientific Registry of Transplant Recipients January 2018 report. And our median wait time for a liver transplant is 3.8 months, more than three times faster than the national median wait time.

The Liver Transplant Center is part of the hospital’s Division of Gastroenterology & GI Surgery, which is ranked #1 in the country among all Honor Roll hospitals in the 2018-19 U.S. News & World Report listing of Best Children’s Hospitals.

The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the assignment of all solid organ transplants, including liver, kidney, pancreas, intestine, heart and lung.

UNOS receives information from hospitals throughout the country about adults and children who need organ transplants. The liver transplant team at Cincinnati Children's is responsible for sending information about your child to UNOS and updating this information as your child's condition changes.

UNOS has established liver transplant criteria to ensure the waiting list process is fair and accurate. People needing a transplant are placed on a waiting list and given a “status” code. Those in most urgent need of a transplant are placed highest on the list and are given first priority when a donor liver becomes available. The system used to prioritize patients waiting for liver transplants is based on statistical formulas that help predict which patients are most likely to die soon without a liver transplant.

UNOS uses the Model for End-Stage Liver Disease (MELD) score for adolescent and adult patients and the Pediatric End-Stage Liver Disease (PELD) score for children. A patient's score may go up or down over time depending on the status of his or her liver disease. That is why it is important for all patients to have their MELD or PELD score reassessed on a regular basis while on the waiting list.

Getting a liver that is right for your child is one of the most unpredictable steps of the transplant process. That said, the median wait time for a transplant at Cincinnati Children’s is 3.8 months. This is more than three times shorter than the national median wait time of 13.5 months.

If a relative or family friend is willing and able to donate part of his or her liver, that will accelerate the transplant process. If a living donor is not available, though, the wait could be months or years. Since your child’s wait time depends in part on his or her condition, the liver transplant team will monitor your child closely to ensure UNOS has an accurate picture of his or her need for a transplant.

Living donors are relatives or family friends who give part of their liver to a child. This can save precious time, since the child does not have to wait for a liver from a deceased donor to become available.

If a relative or family friend wants to be considered for a living liver donation, the living donation team at Cincinnati Children’s will begin a thorough evaluation process. The evaluation considers the potential donor’s blood type, blood vessel anatomy, liver size and overall health. In urgent cases, the evaluation can be competed within weeks.

The living donor’s surgery takes place at Cincinnati Children’s in the operating room next door to where the patient’s transplant operation takes place. The donor recovers in the same intensive care unit and step-down unit as the recipient, and usually is hospitalized five to seven days. After going home, the donor has restrictions regarding work and activity for about six weeks.

Learn more about living liver donation