Pretransplant mortality in children awaiting living donor liver transplantation: a prospective center-based study

Background High mortality in children awaiting liver transplantation is a significant concern. At Cipto Mangunkusumo Hospital, the only active and established pediatric living-donor liver transplantation (LDLT) center in Indonesia, similar challenges persist. This study aims to determine the mortality rate, time to death or transplantation and causes of death in children listed for LDLT at our center. Methods This prospective single-center cohort study was conducted from January 2023 to December 2024. Consecutive sampling included all eligible children age 0–18 listed for LDLT. Participants were monitored from listing until pretransplant death, transplantation, loss to follow-up or study completion. The primary outcome was all-cause mortality on the LDLT waiting list. Results Sixty-two children were enrolled; 64.51% ( n =40) were female with biliary atresia accounting for 72.58% of diagnoses. Malnutrition was identified in 70.97% ( n =44) and 35.48% ( n =22) had a history of cytomegalovirus (CMV) infection. Median duration from listing to death was 87.5 days. Median time to transplantation was 263.5 days. During follow-up, 22 children died with sepsis as the leading cause, 22 underwent LDLT, 13 were lost to follow-up and 5 remained on the waiting list. Donor scarcity contributed substantially to prolonged listing and loss to follow-up. Conclusions Children listed for liver transplantation experience a high waiting list mortality at our center. This is primarily due to infection, malnutrition and socioeconomic factors. Sepsis persists as the principal cause of death. LDLT remains the only feasible option for children requiring liver transplantation in Indonesia.