Liver Transplant
What to Expect

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What to Expect at Your First Appointment at the Pediatric Liver Transplant Center

Liver disease can cause a child’s health to decline rapidly, so Cincinnati Children’s offers Liver Care Clinic appointments within 48 hours. We respond even faster if the need is urgent. We also offer second opinion appointments urgently.

Depending on your child’s current condition and the medical records available to us, their first appointment could involve an initial outpatient consultation or a liver transplant evaluation. Other children are admitted as inpatients for their evaluation, depending on their health and the urgency of their need for a liver transplant.

Making an Appointment at the Pediatric Liver Transplant Center

We want it to be easy for you to get the care you or your child needs. You can contact us directly to schedule an appointment. Or, your pediatrician or provider can refer you to our center. If you have been told your child needs a liver transplant at another center, or if they have been declined for a transplant elsewhere, we also provide second opinions.

Before Your Appointment

Our care team will reach out to your child’s doctor for details about your child’s medical history, past test results and previous treatments.

You also will receive a phone call from a transplant financial manager at Cincinnati Children’s. This person will call you to discuss your insurance coverage and transplant-related benefits. He or she also will contact your insurance provider for other details about your coverage. We will make sure you have all the information you need about the financial aspects of liver transplant.

On the Day of Your Visit to the Pediatric Liver Transplant Center

Conditions that affect the liver are often complex and call for care from many different doctors and specialists. We'll work to make your visit with us as easy and efficient as possible. Most importantly, we'll spend the time talking with you and your child about any questions or concerns you may have. We'll also help you prepare for what may come next.

Before Your Appointment

Please keep in mind that our hospital is a big place. You may want to arrive about 30 minutes before your child's appointment — 15 minutes to park and walk to the Liver Care Center (located at main hospital, Burnet Campus) and 15 minutes to check in at the registration desk on C2.

Please contact us if you are running late for your appointment.

At Your Transplant Evaluation Appointment

There are many steps we must take before we’re able to put your child on the wait list for a new liver.

Your child’s first appointment begins with an in-depth exam. This includes blood work, imaging and other tests to confirm their diagnosis. Our team decides if transplant is the best option. If a new liver is needed, they will evaluate the urgency of your child’s condition.

During this visit, our liver transplant team shares our approach to pre- and post-transplant care. We help you understand your child’s illness, the transplant operation, the risks and benefits of this surgery and requirements for follow-up care.

Your child’s evaluation will include visits with all members of the multidisciplinary transplant team, including the anesthesiologist, transplant surgeon, social workers, dietician, psychologist, pharmacist, transplant financial coordinator and infectious disease physician.

After Your Transplant Evaluation Visit

After your liver transplant evaluation, the hepatology and transplant surgery physicians will review all test results, imaging, blood work, and other details of your child’s medical condition to determine if transplant is the best option for your child. Your Transplant Coordinator Nurse will be in frequent contact with you during this time to keep you updated on the process and the status of your child’s approval for transplant.

If your child is approved for a liver transplant procedure, they will be placed on the national transplant waiting list.

People with the most urgent need for a new organ are placed higher on the list. During this time, our team will closely monitor your child’s condition. Support groups are available to help you during this overwhelming time.

Our team will contact you when a liver becomes available. If your child is not already admitted to the hospital to await transplant, you will need to get to the hospital quickly to prepare your child for surgery. If the liver is from a living donor, the surgery will be planned in advance.

Frequently Asked Questions

What is a liver transplant?
A liver transplant involves a complex surgery to replace a diseased liver with a whole liver or a section of a liver from someone else. The transplanted organ may come from a deceased donor, or from a relative or family friend who is willing to donate part of his or her liver.

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

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