Several conditions may necessitate liver transplantation in children. The most common is biliary atresia, a congenital condition where bile ducts fail to develop normally. Other indications include metabolic disorders (such as Wilson's disease, alpha-1 antitrypsin deficiency, tyrosinemia), acute liver failure (from medication reactions, infections, or unknown causes), liver tumors (hepatoblastoma, hepatocellular carcinoma), progressive familial intrahepatic cholestasis (PFIC), Alagille syndrome, and autoimmune hepatitis. In some cases, children with cystic fibrosis may develop liver disease requiring transplantation. Our pediatric hepatologists conduct comprehensive evaluations to determine if transplantation is the appropriate treatment for your child's specific condition.

Pediatric donor liver allocation follows strict protocols established by national organ procurement organizations. Children are prioritized for pediatric donor organs, and allocation is based primarily on medical urgency rather than time on the waiting list. The PELD (Pediatric End-Stage Liver Disease) or MELD (Model for End-Stage Liver Disease) scoring system is used for children under 12 and those 12-17, respectively. These scores calculate how urgently a transplant is needed based on lab values and clinical factors. Children with acute liver failure receive highest priority status. Geographic proximity to the donor is also considered to minimize organ preservation time. For living donation, the process is separate from the deceased donor waiting list, and compatibility testing determines if the potential donor is suitable for the specific child.

Recovery after pediatric liver transplantation occurs in phases. The initial hospital stay typically lasts 2-3 weeks, with the first few days in the pediatric ICU for close monitoring. As your child stabilizes, they'll transition to the transplant unit where the focus shifts to medication management, nutrition, and early mobilization. After discharge, frequent outpatient visits are required (2-3 times weekly initially, gradually decreasing). Most children can return to school within 2-3 months, though physical activity restrictions may continue for 3-6 months. Complete recovery takes 6-12 months, during which your child will gradually regain strength and energy. Throughout recovery, our multidisciplinary team provides comprehensive support including specialized nursing care, physical therapy, nutritional guidance, and psychosocial support for both the child and family.

The long-term outlook for pediatric liver transplant recipients has improved dramatically over the years. Current one-year survival rates exceed 95%, and five-year survival rates are approximately 85-90%. Many children who receive liver transplants go on to live normal, healthy lives with excellent quality of life. They typically attend school, participate in sports and activities, and reach developmental milestones. Growth and development usually improve significantly after successful transplantation. However, lifelong immunosuppression medication is necessary to prevent rejection, requiring consistent adherence and regular medical follow-up. As children transition to adolescence and adulthood, medication adherence becomes particularly important. Long-term complications can include rejection, infection, medication side effects, and rarely, recurrence of the original disease. Our transplant team provides comprehensive long-term follow-up care, transitioning to adult care when appropriate, to monitor for and address any complications that may arise.

Preparing for pediatric liver transplantation involves multiple aspects. Medically, your child will undergo comprehensive evaluation including blood tests, imaging studies, and consultations with various specialists. Our transplant coordinator will guide you through this process. Logistically, ensure you have reliable transportation for frequent hospital visits and plan for extended hospital stays. If you live far from our center, investigate housing options like Ronald McDonald House. Financially, work with our financial counselors to understand insurance coverage and potential additional resources. Emotionally, utilize our psychosocial support team including child life specialists who can help explain the process to your child in age-appropriate ways. Consider joining support groups for transplant families. For siblings, arrange care during hospital stays and ensure they receive attention and age-appropriate information. Our multidisciplinary team provides comprehensive support throughout this journey, including pre-transplant education sessions for the entire family.

Rejection occurs when the immune system recognizes the transplanted liver as foreign and attacks it. In pediatric patients, the risk of experiencing at least one rejection episode is approximately 30-50% within the first year, though not all episodes are severe. Signs of rejection include fever, abdominal pain, jaundice (yellowing of skin/eyes), changes in stool color, and abnormal liver function tests. Regular blood tests monitor for early signs of rejection, often detecting it before symptoms appear. When rejection is suspected, a liver biopsy is typically performed for confirmation. Treatment usually involves adjusting or temporarily increasing immunosuppression medications. Most rejection episodes respond well to treatment when caught early. The risk of rejection decreases over time but never completely disappears. Medication adherence is crucial in preventing rejection, which becomes particularly important as children enter adolescence. Our transplant team works closely with patients and families to develop age-appropriate strategies for medication adherence and provides comprehensive education about recognizing potential signs of rejection.