How Do You Discuss Liver Transplant with Your Child?

A liver transplant involves surgically removing a damaged or otherwise impaired liver from a person’s body and replacing it with a healthy liver from a compatible donor. This surgery is typically performed in the event of liver failure, which is when the person’s liver can’t function normally and they won’t be able to survive without a new one. A liver transplant is typically the last resort doctors recommend after all other possible treatments for the liver have proven ineffective.

liver transplant for child patients may be conducted in two ways. The child may either receive a liver from a deceased donor who has agreed, or whose guardians have agreed, to donate their organs after death. The child may also receive a piece of a living donor’s liver, which will grow to normal size as the child grows. 

Parents of children and adolescents in need of liver transplants should be ready to discuss the procedure at length with their children. This will help young patients understand what to expect before, during and after the surgery and help ease any fears or anxieties they might have about the process. The following guide will help you successfully talk through the particulars of liver transplantation with your child:

Familiarise Yourself with the Surgery

Understanding essential information about liver transplants will put you in the best position to help your child through this complex surgery. Your child’s doctor is a reliable, trustworthy first source of information about their condition and about the transplant process. It may also help you to research more about the procedure and the experiences of paediatric liver patients on your own, but do make sure to get your information from reputable sources.

Break the News to Your Child in an Age-Appropriate Way

While you may not initially want to tell your child too much about the surgery out of fear of overwhelming them, this will probably only make them more afraid. If they don’t know what’s about to happen to them, they may try to guess or imagine possible outcomes on their own and stress themselves out more in the process. Conversely, sitting down and having an honest conversation with your child can do wonders for their peace of mind as well as your own.

As a general rule, it’s best to tailor your initial explanation based on your child’s age, developmental level and general personality. The older your child is, the better equipped they’ll be to grasp complex concepts such as how organ donation works, risks associated with transplants and what to expect after surgery.  Let your child control the pace and direction of the conversation and be prepared to answer any questions they ask as simply and clearly as possible. You can also ask follow-up questions to make sure they understand the information you’re giving them.

Communicate Regularly with the Transplant Team

Once your child’s doctor determines that a liver transplant is the best course of action, they’ll typically connect you to a transplant centre. You’ll then meet the transplant team, which will be composed of surgeons, hepatologists or liver specialists, transplant coordinators, dietitians, pharmacists, social workers, child life specialists and other relevant health services providers. The team will subsequently run a series of tests to ensure that your child is healthy enough for the surgery. These may include blood tests, imaging tests such as CT scans or abdominal ultrasounds and biopsies. 

The pre-transplant evaluation is an opportunity for the team to learn as much about your child and their condition as possible. This will enable them to make the most informed decisions possible for your child’s care. Make sure your team has your contact details so that they can contact you promptly about any important developments, such as test results or donor availability.

You and your child should also feel free to bring any questions or concerns you might have to the transplant team at any point in the process. Older children and adolescents may also benefit from the opportunity to speak with their medical providers on their own. This allows them to ask their own questions without having to worry about protecting their parents.

Be Prepared to Listen

Your child may come to you with thoughts and feelings about their liver transplant surgery at multiple points throughout the process. While it may be tempting to encourage them not to think about it for their peace of mind, try not to dismiss any fears, anxieties or concerns they might have outright. Instead, allow them to express their emotions freely and assure them that everyone currently involved in their care has their best interests at heart. Encourage your child to speak with your transplant team’s psychologist if they find themselves in need of more mental health assistance. 

Search for Success Stories

Most adolescents and children who undergo liver transplants go on to live healthy, fulfilling lives after the surgery. Reading up on the experiences and stories of other paediatric liver patients may be soothing and grounding for both you and your child. These stories may also give your child a clearer idea of how to prepare for their surgery and how to take care of themselves post-operation.

Having a serious medical condition will be hard for any child, and undergoing major surgeries and having to take specialised medication can make it even more stressful. Open and honest communication can help your child cope healthily with these stressors and recover well in the long term.