Seven-month-old Gauteng baby Divya Ashlee Singh’s smile and bright eyes hide the fact that she has a life-threatening liver disease. The baby girl, who appeared healthy when she was born in January, got ill two weeks after her birth.
Her dad Dhenesh said: “She used to throw up her milk after every feed. After continual doctors visits, blood tests, changes of milk formula and a liver biopsy she was diagnosed with a life-threatening liver disease called biliary atresia.”
According to the US National Institute of Diabetes and Digestive and Kidney Diseases, biliary atresia is a life-threatening condition in infants whose bile ducts inside or outside the liver do not have normal openings.
It is rare and only affects about one in every 18000 infants.
The disease is more common in females and can be treated with surgery, called the Kasai procedure, or with a liver transplant.
“My wife Cindy and I, and other family members, volunteered to be tested as possible donors, but we were not compatible,” said Singh, 40, an IT executive.
Singh, who also has two sons, Divesh, 10, and Dhevan, 4, said his baby daughter has to be fed through a tube.
He said last week he decided to reach out to the public and posted a Facebook page called “Divya Ashlee Singh – My Biliary Atresia Journey.”
“This has made me realise the importance of organ donors. My wife and I have now signed up as organ donors.
“The waiting list for organ donors is very long. I am reaching out to living donors,” said Singh.