Pediatric Liver Transplants Frequently Asked Questions (FAQs)

There are several reasons why your child’s doctor might recommend a liver transplant. As with any important decision, you will want to learn as much as you can about the topic and will probably have many questions. We’ve created a list of some of the most commonly asked questions to help you understand the transplant process. If you can’t find the answer you’re looking for, or you have questions not answered here, please contact us at livertransplant@childrenscolorado.org or 720-777-2335.

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How can I get my child on the liver transplant waitlist?

The first step is to get an evaluation through our Pediatric Liver Transplant Program. Our transplant team completes a comprehensive evaluation to determine if your child needs a liver transplant and how soon they need one. As part of the evaluation, the team will also determine if there are alternative or additional medical or surgical strategies that could improve your child’s health. We will also determine if changes to their current care plan would make them a better candidate for transplant. The position your child is placed on the liver transplant waiting list is determined by the severity of their illness.

If your child is already listed on another program’s list, you may elect to be evaluated and listed at Children’s Hospital Colorado to increase the likelihood of receiving a transplant.

What does the evaluation for liver transplant look like:

Each transplant center has its own guidelines for deciding if your child is a good candidate for a liver transplant. However, at every center, you can expect to have these tests done:

• A medical and surgical assessment: The transplant team will review your child’s medical and surgical history carefully. You will be asked about any illnesses, surgeries, and treatments your child has had in the past. You will also be asked about your family’s history. We will investigate anything that may impact the success of your child’s transplant.
• A physical exam: The transplant team will need to make sure your child is healthy enough for transplant surgery, and that a transplant is the best choice for your child.
• A psychosocial exam: Getting a new liver has many benefits, but also has some risks. The psychosocial exam is to make sure you and your child are emotionally prepared for the surgery, post-transplant care and living with a new liver. You and your family may have some unexpected feelings during this journey. The psychosocial exam helps make sure you and your child will be able to cope with the physical and emotional aspects of your transplant.
• Laboratory and radiologic testing: The transplant center will need to know your child’s blood type in order to match you to a suitable liver. We will also use blood work and special radiology tests to understand the severity of your child’s liver disease.

Can newborns and babies get a liver transplant?

Yes, infants can receive liver transplants. Your child’s doctor, however, may recommend delaying the transplant to allow your baby to grow as much as possible before the operation. The larger and healthier the baby is, the less likely they will encounter complications during or after the transplant. Many factors affect when your child should get a transplant and our health care team weighs each factor carefully in trying to ensure the best outcome and long-term health after pediatric liver transplant for each child. Our live donor transplant program offers additional opportunities for infants and children to receive a liver transplant.

What are the differences between living and deceased donor liver transplants?

• Living donor liver transplant: This is when a living donor (family, friend or someone unknown) elects to give a part of their liver to someone else. This option typically shortens the wait time for the recipient and may provide the opportunity for your child to undergo transplant sooner, prior to any further decline in their health. The amount of the liver required from the liver donor is determined by the transplant team to ensure that your child’s needs are met. Donating part of their liver does not change the life expectancy for the liver donor. A live donor liver will grow as your child does.
• Deceased donor liver transplant: This is when a deceased donor has asked that their organs be donated to others requiring a transplant at the time of their death. The demand for liver donors outweighs the availability of these donors, and patients may have long wait times before they receive a donor organ. This shortage is the reason we also offer the live donor option. Deceased donor livers may be used as a whole organ or as part of the liver may, depending on what is the right size for your child.

What are the benefits of receiving a living donor liver vs. a deceased donor liver?

• The benefit of living donation is that children can be transplanted at an earlier stage in their disease process, using a very healthy donated organ. This option means children will be healthier when they are transplanted, as they don’t have to wait for a deceased donor liver from the waitlist. A live donor transplant may also reduce your child’s recovery time. In addition, the transplant operation can be scheduled ahead of time, which gives the transplant team and families the opportunity to plan for what works best for both the donor and recipient.
• The benefit of a deceased donation is that it doesn’t require a healthy donor to have surgery in order for the transplant to proceed.

Who can donate a liver (or portion of a liver) to my child?

There are many options for liver donors and the following are taken into consideration for potential donors:

• Donor must be between 18 and 55 years of age
• Donor overall physical and mental health status must be extremely good
• Donor blood compatibility

Our most common living donors are typically parents, siblings or friends of the family.

What is an altruistic (non-directed) living donor?

In non-directed donation, the donor does not specify the person who will receive the donated part of their liver for transplant. The match is arranged based on medical compatibility with a patient in need. Some non-directed donors choose never to meet their recipient, while others meet them over time. Similarly, some recipients choose to meet their donor at some point after transplant, while others prefer not to do this. These are decisions our transplant team can help you make.

How do you choose the best donor liver for my child?

There are many medical factors to consider when looking the best donor-recipient match for your child:

• Blood type and size of liver
• Relative distance between donor and recipient
• Medical urgency of the recipient
• How closely the immune systems of the donor and recipient are matched
• Live liver donor availability

What are the average wait times for a patient at CHCO for liver transplant?

Waiting times can vary greatly between patients based on a number of considerations. Factors affecting how long your child may wait include how sick your child is and how many donors are available in your local area compared to the number of patients waiting. Your child may receive an organ within days, or your child may wait months. Once your child is added to the national organ transplant waiting list, the median wait time to liver transplant at Children’s Colorado is currently 2.1 months (shorter than national median wait times). This means your child may receive their liver transplant much faster at Children’s Colorado than at other programs.

What is the success rate of liver transplants?

Here at Children’s Colorado, our success rates are comparable or better than national outcomes. Transplant outcomes are updated by the Scientific Registry of Transplant Recipients (SRTR) every six months, and we will share our outcome data with you during the liver transplant evaluation.

What are the potential complications and side effects of a pediatric liver transplant?

Like any surgery, liver transplantation does come with some risks. Specific to liver transplantation, complications can include bleeding, bile leaks and bile duct strictures. Most of these complications are reversible and occur within the first few months after the transplant. Our surgical team is very experienced and takes every precaution to minimize these complications.

The main medical side effects of a liver transplant in children come from the anti-rejection medicines, also called immunosuppressants. Patients must take these medicines to keep their body from rejecting their transplanted organ. Common side effects include weight gain, increased blood pressure and increased risk of infection. Your healthcare team will work with you to adjust your child’s medications to minimize any side effects while keeping their transplanted liver healthy.

Surgical and medical risks of transplants can be minimized by choosing an experienced liver transplant center, like Children’s Colorado. Our team includes pediatric transplant physicians, surgeons, nurse specialists, nutritionists, psychologists, social workers and pharmacists. This highly specialized care team allows us to anticipate and keep complications and side effects to a minimum.

What are my child’s restrictions after liver transplant?

There are very few restrictions that our transplant team will recommend. We encourage shared decision making about returning to school, day-to-day activities and sports. There are many successful professional athletes and public figures that have received liver transplants, such as Olympic snowboarder Chris Klug, Apple Founder Steve Jobs and guitarist Phil Lesh. Traveling internationally is also okay as long as your child will have access to adequate health care facilities during your trip. Please consult your doctor if you do plan to travel as additional vaccinations may be needed for certain countries. The best way to optimize the success of the transplant is by leading a healthy lifestyle and following the prescribed medication regimen.

Is it safe to get a pediatric liver transplant in another country?

There are many qualified transplant centers throughout the world. The largest barrier for most patients using this option is insurance coverage, which may limit access to these services. Additionally, countries around the world have different processes for listing and evaluation for transplant that may be barriers to accessing this care.