Dad overhauls his lifestyle to become a living liver donor for his toddler with rare condition

Singapore - A father has made a dramatic change in his life to become a living liver donor for his three-year-old son who suffers from a rare genetic condition. Noel Joshua Selvanathan, 36, once struggled with substance and alcohol abuse and had hepatitis C and fatty liver disease, making him ineligible to donate. After being released from incarceration, he met with doctors and realized the gravity of his son Isaiah's situation. Isaiah was diagnosed with Alagille syndrome, a rare genetic disorder affecting approximately one in 70,000 individuals. Characterized by abnormal bile ducts, this condition leads to bile accumulation within the liver, impairing its ability to eliminate waste from the bloodstream and causing damage. Typically identified in infancy or early childhood, Alagille syndrome necessitates liver transplantation as the sole viable long-term treatment option. Initially diagnosed at KK Women’s and Children’s Hospital, Isaiah was subsequently referred to the National University Hospital (NUH). As the only public hospital in Singapore authorized to conduct pediatric liver transplants, NUH manages these intricate procedures for children under 18 through the National University Centre for Organ Transplantation (NUCOT) and the Khoo Teck Puat, National University Children’s Medical Institute. Dr. S. Venkatesh Karthik, a senior consultant specializing in pediatric gastroenterology, nutrition, hepatology, and liver transplantation, noted Isaiah's severe symptoms upon initial examination. At two years old, the child exhibited extreme weakness, jaundice, poor appetite, and low energy levels. Despite efforts by his older sister to engage him in play, Isaiah lacked the vitality typical for his age. Recognizing the critical need for a transplant, the medical team promptly enlisted a nutritionist to optimize Isaiah's health prior to the procedure. Following extensive testing and imaging, Isaiah was placed on the national waiting list or considered for an altruistic anonymous living donor. The average waiting period for a deceased donor liver in Singapore spans 12 to 22 months, though this can vary based on factors such as blood type, medical urgency, and the severity of the patient's condition. Living donor liver transplants offer a more expedited solution, typically reducing the waiting time to around two months, as they involve a healthy family member or compatible individual donating a portion of their liver. Upon his release from incarceration, Noel learned the seriousness of his son's condition. Doctors advised that a liver transplant was the best hope for Isaiah's future. Initially, his wife, Melissa Orchard, offered to donate part of her liver. However, scans revealed lesions in her spleen, leading to its removal and disqualifying her as a potential donor. Melissa, a 39-year-old housewife, stated that following the removal of her spleen, she was no longer able to contribute a portion of her liver to Isaiah. Consequently, the only remaining option for Isaiah was to await a cadaveric donor. This outcome underscores the challenges faced by families dealing with rare conditions requiring organ transplants.