What to Expect If Your Child Needs a Liver Transplant

Before Liver Transplant

For our team at Seattle Children’s to decide if a liver transplant is right for your child, we must perform a complete check-up, also called a pre-transplant evaluation.

After your child’s evaluation, the transplant team will decide if a liver transplant is the best option for your child.

If your family and the transplant team agree that a liver transplant is the right decision, your child will be put on the waiting list for a liver, even if a living-donor liver transplant is being considered. There are many things you must do and keep in mind while waiting for a liver transplant.

Transjugular Intrahepatic Portosystemic Shunt (TIPS)

If your child is waiting for a liver transplant, they might need a procedure known as TIPS, which stands for transjugular intrahepatic portosystemic shunt.

  • What is TIPS?

    TIPS is an abbreviation for a procedure that helps correct blood flow problems in the liver. It stands for: 

    • Transjugular – placed from the jugular vein (vein in the neck)
    • Intrahepatic – within the liver
    • Portosystemic – from the portal vein to the general circulation (the portal vein is the main vein that carries blood from the stomach and intestines to the liver)
    • Shunt – a channel for blood to flow 

    TIPS is a method to decrease high pressure in the vein that brings blood into your child’s liver (hepatic portal vein). This vein carries blood to your child’s liver from their esophagus, stomach, intestines and spleen. High pressure in this vein (portal hypertension) can lead to serious problems, including serious internal bleeding.

    We care for children with this condition in our Portal Hypertension Clinic, using TIPS as well as other treatment options.

    In TIPS, doctors connect your child’s portal vein to one of the veins that carry blood from the liver to the heart (hepatic veins). The connection is called a shunt. The shunt means some blood from your child’s portal vein does not have to pass through the liver. Instead, the blood goes straight to the hepatic vein. Because less blood has to enter the liver, the pressure in the portal vein goes down.

    Before TIPS, your child gets general anesthesia. The doctor makes a small cut (incision) in your child’s neck and another small cut in their groin. A thin tube (catheter) is put through the neck incision into the jugular vein. The doctor threads the catheter through your child’s veins to their liver. A small ultrasound catheter is put through the groin incision into the femoral vein.

    Using the jugular vein catheter, the doctor makes a tunnel through the liver. The path of the catheter is guided by fluoroscopy and ultrasound. The tunnel connects the portal and hepatic veins. A tube (stent) made of metal and synthetic fabric is placed in the tunnel to hold it open so blood can flow through.

    The neck and groin catheters are removed at the end of the procedure, and the tiny incisions do not need any stitches.

    TIPS is done by an interventional radiologist, and it takes 2 to 6 hours.

  • Who needs TIPS?

    TIPS is done most often for children who have liver disease leading to liver failure and who are waiting for a transplant. Liver disease may raise the pressure in the portal vein, usually because scarring in the liver slows down blood flow through this organ.

    Occasionally children are born with a blockage in the portal vein or they develop a blockage early in life. This blockage (cavernous transformation) also causes high pressure in the portal vein.

    High pressure in the portal vein can make blood back up in the veins of your child’s esophagus, stomach and intestines. Extra blood makes the veins swell. Swollen veins (varices) raise the risk that your child will bleed in these organs, which can be serious.

    High pressure in the portal vein can also make fluid build up in your child’s belly (ascites) or chest (hydrothorax). This can cause swelling of the belly and make it hard to breathe.

    High pressure in the portal vein can also cause the spleen to become full of slow-moving blood (congested). This can lead to an enlarged spleen (splenomegaly) and abnormal buildup of blood cells inside the spleen (sequestration).

    TIPS lowers the pressure in the portal vein, so it lowers your child’s risk of bleeding or having other complications. Your child might need TIPS if they have already had one or more of these problems. TIPS helps prevent the problems from happening again.

    Instead of using the TIPS method, a surgeon can make an incision in your child’s belly (open surgery) and surgically connect the splenic vein (a branch of the portal vein) to the renal vein coming from the kidney. Blood then flows directly back to the heart without having to go through the liver. Open surgery may be recommended for some children based on their anatomy or the cause of high pressure in their portal vein.

    Some children cannot have the open surgery because of how poorly their liver works. TIPS gives these children an option while they wait for a liver transplant. For some children, TIPS works well enough that they do not need a transplant as urgently as before. Another benefit of TIPS is that your child will probably recover faster than they would from open surgery. Often children go home within 24 hours after TIPS.

  • What’s special about TIPS at Seattle Children’s?

    Seattle Children’s has the only liver program and only liver transplant program in the Northwest especially for children. We are also the only hospital in the Northwest that does TIPS for children.

    Using this method, we have lowered portal hypertension and bleeding for many patients. Sometimes their condition becomes stable for a long time, and we can delay the need for a transplant.

  • Who’s on the TIPS team?

    These doctors at Seattle Children’s perform TIPS: 

    Our patients who have TIPS are also cared for by these doctors: 

Liver Pre-Transplant Evaluation

This evaluation checks if a liver transplant is an option for your child. It is usually done on an outpatient basis.

It may take several days or weeks to complete the entire process, depending on the medical urgency of your child’s case. You might need to make several visits to the Liver Clinic and other clinics over that time.

  • What will we learn from our pre-transplant evaluation?

    During your child’s evaluation, the team at Seattle Children’s will help you and your family learn more about transplant. You will learn about: 

    • Benefits and risks of transplant
    • Medicines that suppress the immune system
    • Health insurance coverage
    • Organ donation
    • What to expect while waiting for an organ
    • What to expect during surgery
    • What to expect after surgery
  • What happens during the pre-transplant evaluation?

    Your child’s evaluation will include: 

    • A review of your child’s medical records and history
    • Clinic visits with the transplant team
    • A physical exam
    • Blood work and diagnostic tests 

    The evaluation begins with a review of your child’s medical and surgical history. You will then have an office visit with a hepatologist — a doctor who specializes in liver diseases. Your child might see other specialists, depending on your child’s condition.

    You will meet with a transplant surgeon, who will explain the surgery and discuss any aspects of your child’s transplant evaluation that may affect the surgery or that may be concerning to the team.

    You will also meet other members of the transplant team, such as these people: 

    • Transplant nurse coordinator
    • Nurse practitioner
    • Social worker
    • Transplant specialist
    • Pharmacist
    • Dietitian
    • Anesthesiologist 

    The team will explain the surgery, donor options and the type of care your child will need after the transplant.

    Your child’s transplant nurse coordinator will organize your child’s pre-transplant evaluation. This includes coordinating the tests and consultations needed for a complete evaluation.

    Your child’s social worker will help your family and child understand the emotional and practical aspects of transplant. They will help you address your child’s social and emotional needs.

    Your transplant specialist will schedule your child’s clinic appointments and help you understand the details of your insurance coverage that relate to transplant. If needed, the transplant specialist and social worker will work together with you to identify additional sources of funding.

    The pharmacist will help explain the medicines your child will need after transplantation.

    The dietitian will tell you how food and good nutrition can help your child before a transplant. They will explain how your child’s nutritional needs will change after transplant.

  • What tests will my child need?

    Many tests are needed for the pre-transplant evaluation. These tests help us to: 

    • Decide how urgently your child needs a transplant
    • Ensure that your child receives a donor organ that is a good match 

    Types of testing and interviews include: 

    • Blood and lab tests
    • Diagnostic tests
    • Social work evaluation
    • Nutritional assessment
    • Financial assessment 

    The transplant team will determine whether your child needs any additional tests.

    We consider each child on an individual basis. We may request other consultations so we can understand your child as completely as possible.

  • What about evaluation of a living donor?

    If a living-donor liver transplant is being considered, the person who volunteered to donate will have a separate evaluation at University of Washington Medical Center. This happens after: 

    • You and the liver transplant care team decide your child is a candidate for liver transplantation.
    • Your child has been placed on the United Network for Organ Sharing (UNOS) transplant waiting list.

Liver Transplant Decision

To decide if a liver transplant is the right treatment for your child, the transplant team at Seattle Children’s will carefully look at your child’s: 

  • Medical need for transplant (urgency)
  • Blood and diagnostic tests
  • Medical history, including previous surgery
  • Physical exam 

 We also consider what we learn in our meetings with your family.

  • How will we find out what the team decided?

    When all of your child’s information and test results are ready for review, the entire transplant team will meet to make a recommendation about transplant surgery for your child. A member of the team will communicate the recommendation to you by phone or at your child’s next scheduled clinic visit. You will also receive a summary of our decision in writing.

  • What are the possible outcomes?

    The decision could include any of the following: 

    • Your child is ready to be listed for transplant now.
    • Transplant is not the best option for your child.
    • Your child might be a candidate for transplant in the future, but we are not recommending a transplant at this time.
  • What factors affect the decision to go ahead or wait?

    The biggest factor in making the transplant decision is the urgency of your child’s situation.

    • If your child is in intensive care with acute liver failure, the evaluation and transplant decision can be made within 1 day.
    • You can expect a decision within 1 week of completing your pre-transplant evaluation if your child has had liver disease for a long time and the liver’s function continues to get worse.
  • If the team decides on a transplant, what happens next?

    If the team decides that your child is a candidate for liver transplant and you as a family agree, your child will be placed on the United Network for Organ Sharing (UNOS) transplant waiting list, even if your child is receiving liver tissue from a living donor.

Preparing and Waiting for a Liver Transplant

Waiting for a donor organ can be a stressful time for your child and family. Here are some suggested ways to prepare and cope.

  • Take good care of your child’s health

    Make sure your child takes all medicines as prescribed. Tell your child’s transplant nurse coordinator if any other medicines have been prescribed or changed.

    Also, tell the transplant nurse coordinator if your child is hospitalized for any reason or if your child develops any new medical problems or infections, even if they can be treated out of the hospital.

  • Follow diet and exercise guidelines

    Your child’s dietitian and physical therapist will help you set up a plan to maintain your child’s strength during the waiting period.

  • Update insurance information

    Let your child’s team know of any change in insurance coverage.

  • Learn more about transplantation

    Wait time can be a good time to get to know the transplant team and to become familiar with the care that your child will need after the transplant.

  • Meet others or join a support group

    Some families find it helpful to meet other transplant patients and their families. If you would like to do this, ask your nurse coordinator.

  • Stay in touch with family and friends

    Good company will take your mind off waiting and enhance your quality of life.

  • Raise funds

    Depending on your insurance and your financial situation, this could be a good time to start fundraising. Even with insurance, there are many out-of-pocket costs associated with transplant such as some medicines, insurance co-pays and deductibles.

    The transplant social worker can help you with ideas on how to start fundraising.

  • Relax

    Take time to read with your child. Listen to music together. Watch funny movies. An older child can write in a journal, meditate or do light yoga. You can play games with a younger child. Focus on creating stress-free, enjoyable times with your family.

  • Make sure the transplant nurse coordinator can reach you at all times

    You will need a cell phone with voicemail. If you do not have a cell phone, ask your transplant nurse coordinator for a pager, which we can order for you. If you have a landline, you will need an answering machine.

    While waiting for a deceased-donor liver transplant, it is important that you do not travel far from your local area. Tell the transplant nurse coordinator about any changes to your address or phone number. Tell the transplant nurse coordinator if you plan to be away from the area and will not be able to get to the hospital within 6 hours. You may need to relocate to the Seattle area while waiting for an organ if you will not be able to get to the hospital within 6 hours either by plane or car.

  • Know how you’ll get to the hospital

    You must be able to get to the hospital within 6 hours after you are told that an organ is available if you are waiting for a deceased-donor organ. Your transplant nurse coordinator and social worker can help you make travel plans ahead of time so everything is arranged when you get the call.

  • Read about hospital services

    Most patient rooms have a pull-out couch for 1 parent or legal guardian to sleep overnight. When your child is in the Pediatric Intensive Care Unit (PICU) right after surgery, 1 parent may use a separate sleeping room if a room is available. Siblings may not spend the night in the hospital.

    Learn more about our hospital services, as well as other services in the neighborhood.

  • Pack your bags

    You must be ready to leave as soon as the call comes if you are waiting for an organ from a deceased donor. Be sure to pack an extra 24-hour supply of your child’s medicines. Remember your cell phone and charger. Include clothes for you and your child and a few toys, books, videos, music and a favorite blanket — things that help pass time and soothe your child.