Transplant Without Borders: Clinical Outcomes and Challenges in Transborder Living Donor Pediatric Liver Transplantation in Jordan

Fareed Khdair Ahmad,1– 3 Dima Abu Nasrieh,4 Mohammad Moazi Rwalah,3,5 Abdullah Ghanma,3,5 Yaser Rayyan,2,6 Yara Hamad,7 Tahani Ahmad,2,8,9 Saeed Mohammad10 1Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics, School of Medicine, The University of Jordan, Amman, Jordan; 2Jordan University Hospital, Amman, Jordan; 3Jordanian Society for Pediatric Gastroenterology, Hepatology, and Nutrition (JOSPGHAN), Amman, Jordan; 4School of Medicine, The University of Jordan, Amman, Jordan; 5Division of Pediatric Gastroenterology and Hepatology, Royal Medical Services, Amman, Jordan; 6Division of Gastroenterology and Hepatology, Department of Internal Medicine, School of Medicine, The University of Jordan, Amman, Jordan; 7Department of Pediatrics, School of Medicine, The University of Jordan, Amman, Jordan; 8Department of Radiology and Nuclear Medicine, School of Medicine, The University of Jordan, Amman, Jordan; 9Department of Radiology, School of Medicine, Dalhousie University, Halifax, NS, Canada; 10Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USACorrespondence: Fareed Khdair Ahmad, Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Department of Pediatrics, School of Medicine, The University of Jordan, Queen Rania street, Amman, 11942, Jordan, Tel +962-795767285, Fax +962-6-5300431, Email [email protected]: To describe the clinical outcomes, complications, and logistical challenges of pediatric living donor liver transplantation (LT) in Jordanian children referred abroad, in the absence of a national transplant program.Patients and Methods: This retrospective study reviewed all pediatric cases referred to the Jordanian Center for Organ Transplantation (JCOT) for LT between 2019 and 2023. Data were collected from JCOT records and follow-up interviews with caregivers. Variables included patient demographics, indications for transplantation, donor-recipient relationships, post-operative complications, survival outcomes, and financial aspects.Results: A total of 31 children were referred for LT, of whom 20 (64.5%) successfully underwent living donor liver transplantation abroad—primarily in Turkey—while 11 (35.5%) remained on the waiting list. Biliary atresia (25%) was the most common indication, followed by Alagille syndrome and progressive familial intrahepatic cholestasis (each 20%). Primary hyperoxaluria, Crigler-Najjar syndrome, and maple syrup urine disease were also observed. Parents were the most frequent donors (70%). The most common complications were bile duct leakage (35%), portal vein thrombosis (20%), and infections (15%). The 5-year post-transplant survival rate was 90%. Among the waiting list group, four children (36.4%) died before receiving a transplant. No children underwent transplantation for pediatric acute liver failure during the study period. The average cost per transplant covered by the Ministry of Health was $61,071, excluding out-of-pocket expenses borne by families.Conclusion: This study highlights the feasibility and challenges of transborder pediatric liver transplantation in Jordan. While clinical outcomes for transplanted children were favorable, significant barriers remain, including delayed referrals, financial strain, and mortality among waitlisted patients. These findings underscore the urgent need to establish a national pediatric liver transplant program to improve timely access and long-term care for children with end-stage liver disease in Jordan.Plain Language Summary: In Jordan, children who need liver transplants do not have access to a transplant center within the country. Instead, they must travel abroad—usually to Turkey—for this life-saving surgery. This study looked at how this process works, what challenges families face, and how children do after their transplants.The researchers reviewed the records of all Jordanian children referred for liver transplantation between 2019 and 2023. They found that 20 children successfully received a transplant abroad, while 11 others were still waiting. The most common reason for needing a liver transplant was a condition called biliary atresia, which blocks bile flow from the liver and can cause liver failure in infants. All transplants were done using living donors, usually a parent.Although most children who received a transplant survived and did well, many faced serious complications after surgery, such as bile leakage or infections. Sadly, four children on the waiting list died before they could get a transplant. Families also faced financial and emotional stress due to the travel, paperwork, and long hospital stays.This study is the first to describe how pediatric liver transplantation works in Jordan under the current system. It shows that while the overseas model can save lives, it also has major challenges. The researchers highlight the urgent need for a national transplant center in Jordan, along with better coordination, earlier referrals, and long-term follow-up care for these children.Keywords: pediatric hepatology, cross-border healthcare, living donor surgery, organ transplant outcomes, health system barriers, Jordan