Father’s Liver Donation Enables Delhi Doctors To Save 1-Year-Old Uzbek Baby With Rare Genetic Disease

Max Super Speciality Hospital, Patparganj, has successfully treated a one-year-old baby boy from Uzbekistan suffering from a rare genetic liver disorder by performing a living donor liver transplant, with the child’s father donating a portion of his liver. The timely intervention proved life-saving after months of progressive illness and failed treatment.

The infant developed jaundice soon after birth and required neonatal intensive care. At two months old, he was diagnosed with biliary atresia and underwent a Kasai procedure, a surgery typically performed in infancy to restore bile flow from the liver. Despite the intervention, the child’s condition continued to deteriorate over the following months, with persistent jaundice, severe itching, poor weight gain, delayed growth and pale stools—signs of advancing liver failure.

As the baby’s health worsened, the family sought specialised liver care in India. On evaluation at Max Super Speciality Hospital, doctors identified that the illness extended beyond the liver. Detailed investigations revealed Alagille syndrome, a rare inherited condition that can affect multiple organs, including the liver and heart. The child was also found to have an associated cardiac condition, significantly increasing the complexity and risk of any major surgical intervention.

Given the rapid decline in liver function and the added cardiac risk, a multidisciplinary medical team reviewed the case and concluded that an urgent liver transplant was the only viable treatment option. With no suitable deceased donor available and the child’s condition worsening, the father volunteered to become a living donor.

After comprehensive assessments to ensure donor and recipient safety, the hospital’s liver transplant team carried out the living donor liver transplant successfully. The surgery marked a critical turning point in the child’s treatment after months of ineffective management linked to the initial misdiagnosis.

The hospital reported that the child is recovering steadily, highlighting the importance of accurate early diagnosis, coordinated multidisciplinary care and timely intervention in managing rare and complex genetic disorders in infants.

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