Pediatric liver transplantation gives a child with liver disease the potential to live a long, active life.
Newer medical technologies make it possible for more people to benefit from a transplant, with fewer side effects. For some diseases, such as genetic and metabolic diseases, a liver transplant can cure the disease.
Most children don’t have significant side effects after a liver transplant. As with any transplant, there is the possibility of organ rejection. Your child’s immune system naturally seeks to fight off foreign matter, such as a donor liver.
Your child will need to take immunosuppressive therapies to help prevent their immune system from attacking the new organ. Our team will customize your child's medications. Over time, we reduce the immunosuppression and stop some medications.
What to expect with a Pediatric Liver Transplant
No single hospital decides who receives a liver transplant or when. Each organ recipient is placed on a national transplant waiting list in order of their need. When a good match becomes available, we offer your child a liver transplant.
What to expect before a Pediatric Liver Transplant
To place your child on the liver transplant waiting list, we do a complete transplant evaluation. During this process, your pre-transplant coordinator guides your family each step of the way.
The evaluation takes about two full days. We thoroughly study your child’s health, and your child might need one or more tests, such as:
- Blood tests: We check your child’s blood to find a donor match. Blood tests can also reveal health factors that help us know how soon your child must have a liver.
- Imaging: We check your child’s general health, including the liver and other organs. Your child may have X-rays, ultrasounds or CT scans.
- Liver biopsy: We may take a tiny sample of your child’s liver to check its condition or look for signs of disease.
- Psychological and social evaluation: Psychologists and social workers talk with your child, if they’re old enough, and your family, to understand your needs and what you expect from the transplant.
- Heart testing: We evaluate your child’s heart with an electrocardiogram (ECG/EKG) and echocardiogram. These painless tests help us assess their health before liver transplant surgery.
We then list your child on the national liver transplant waiting list. Based on the test results and the urgency of your child’s condition, the wait may be a few days, or it could be years. We see your child in regular office visits to keep them as healthy as possible while waiting for a liver transplant.
If your child has a living donor who can donate a partial liver, the wait will be shorter. A living donor donates part of their liver, which grows to full size in both the child and the donor. Learn more about organ donation.
What to expect during a Pediatric Liver Transplant
When a liver becomes available for your child, we’ll call you to come to the hospital. You usually have about six to eight hours’ notice. If you live far away, we create a transportation plan ahead of time.
When you arrive, your child will have a few more tests and some final blood work to ensure that your child is ready for the operation. Then your child will go into surgery for the transplant.
The procedure typically takes up to six hours. We’ll update you during the surgery to let you know how it is going. At Children’s Health, a small, dedicated team performs all liver transplant surgeries, with specialized operating room nurses and liver transplant anesthesiologists. This team’s expertise makes a big difference in our patients’ positive outcomes.
What can I expect after a pediatric liver transplant?
Right after transplant surgery, we take your child to our pediatric intensive care unit (PICU). In the PICU, our specialized care teams provide a very high level of care while your child begins to recover. We use techniques that enable more children to get extubated (have their breathing tube removed) at the end of surgery, so they aren’t on a ventilator in the PICU. The result is shorter PICU stays – often about two days.
Later, your child moves to a special unit where liver specialists care for your child. Most children stay in the hospital for another week or two as they regain their strength. During this time, your child’s health care team will help your family understand your child’s new medicines and activities.
You should be able to stay with your child in the PICU and on the transplant floor. Siblings can visit, too, depending on age restrictions. Please check our current visiting hours and policies for up-to-date information. You’ll also get to know your child’s transplant coordinator, who will be available to support you long after the transplant.
Ongoing care after a Pediatric Liver Transplant
After a pediatric liver transplant, each child has a different experience. All children will need specialized care from transplant specialists throughout their life.
You are your child’s best advocate and are a vitally important person in their care team. You can support your child’s wellbeing by:
- Making sure your child keeps appointments with their health care team
- Keeping up to date with visits to monitor anti-rejection and anti-infection medications
- Keeping open lines of communication with the transplant team
- Educating your child as they get older to understand their transplant and medications and take a more active part in their wellness
It’s very important to stay alert to signs of liver problems [LW2] or infection. If you see these signs, contact your child’s medical team right away:
- Belly that’s swollen or sore
- Dark urine or light-colored stools
- Fatigue (being extremely tired)
- Grouchiness or irritability
- Upset stomach (nausea)
- Yellowish skin or eyes (jaundice)