What to Expect
What is a liver transplant? Why might my child need one? What is the process for liver transplantation?
Liver transplantation replaces a diseased or damaged liver with a healthy liver (either a whole liver or partial liver) from a donor. In some cases, the liver comes from someone who has recently died. In others, an adult can give part of their own liver. The living donor’s liver will regrow over time, while the liver portion they donated will grow in the pediatric recipient.
Liver transplantation may be required when a child’s liver stops working (liver failure) or when a disease or disorder causes permanent damage to the liver.
Children may require a transplant if they have conditions such as:
- Acute liver failure
- Biliary atresia or other congenital cholestatic disease
- Chronic diseases of the bile ducts, such as primary sclerosing cholangitis
- Genetic disorders, such as alpha-1 antitrypsin deficiency, Alagille syndrome, or Wilson disease
- Metabolic conditions, such urea cycle defects and organic acidemias
- Liver tumors
The road to pediatric liver transplantation can be a long journey for some families, while for others the need may arise quickly and unexpectedly.
Every patient needs an initial evaluation to ensure liver transplant is the right treatment. Your child will have a visit with our Liver Care team to confirm their diagnosis and obtain any necessary imaging or blood work.
Once our team of specialists determines that a liver transplant is an option for your child, the Pre-Transplant Evaluation will start. During this time, our team of multidisciplinary specialists will monitor your child’s condition and manage their care in the appropriate setting. In some cases, it may be possible to have your child at home during the evaluation, but if your child requires inpatient care, the evaluation will continue while they are in the hospital.
You will also speak with our hepatologists and surgeons about your child’s health and illness, the transplant process, risks and benefits of transplantation. We will also share what to expect before, during and after surgery. In non-emergent cases, the evaluation process can be completed in 48-72 hours. In an emergent case, the evaluation will take place in less than 24 hours. The evaluation process is designed to thoroughly discern a patient’s need and suitability for transplantation. In some cases, the evaluation process may reveal some additional tests that need to be done before listing.
Once the evaluation is completed, our multidisciplinary committee will meet and review your child’s case in detail. The purpose of the committee meeting is to determine that transplant is the best option for your child and to identify any further testing or data that may help inform the transplant evaluation. Once this process is completed and the committee agrees that liver transplantation is the best treatment option, your child will be listed for a liver transplant. Once your child is listed, our team will be in frequent contact with your family to ensure your child remains ready for liver transplant. It will be important for you to report any changes in your child’s health, keep all appointments with our providers and keep all lab work up to date so we can ensure the best and most timely liver transplant possible for your child. This can be an uneasy, unpredictable time, and our team will be there to support you.
Transplant Episode: In many cases, it will be possible for your child to remain at home until transplant. In some situations, your child will have to remain in the hospital until a liver becomes available.
When your child’s team receives notification from UNOS that a liver is available, you will be informed, and arrangements will be made for your child to go to the operating room to receive the liver transplant. The transplant operation can be set up over several hours to a few days. When the transplant operation is over, your child will recover initially in the PICU. During this time, our team will be very busy looking over your child head-to-toe every day. We will keep you updated about their clinical progress in real time.
Post-Transplant Care: Post-transplant care will begin as soon as your child’s transplant is finished. This will be a comprehensive care plan built by the Liver Care team and tailored to your child’s needs. We will work with your family to help your child heal as quickly as possible in the greatest comfort possible. Care will include medication monitoring and adjustments, routine laboratory testing, ultrasound evaluation of your child’s liver and other tests as needed. Our goal is to provide a smooth transition to home, with a care plan your family feels comfortable managing. Initially, visits to our outpatient clinic will be twice weekly. As your child recovers these will be spaced out.
The Liver Care team includes hepatologists, surgeons and many other experts who have special training in pediatric liver transplantation and related patient needs. Your child will be cared for by a team that includes all of the following pediatric experts (and more if your child has other health conditions or needs):
- Medical liver doctors (hepatologists)
- Surgeons who are specialized in liver transplantation and pediatric hepatopancreatobiliary operations
- Child psychologists
- Child psychiatrists
- Advanced practice nurses
- Nurses who specialize in liver transplant coordination and care
- Other subspecialty physicians as needed for each individual case
- Dietitians
- Pharmacists
- Social workers