When J.B. Lacombe’s son was born, he showed signs of jaundice. Jaundice, caused by extra bilirubin in the blood, results in the yellowing of the skin, eyes, and mucous membranes. At first, J.B. was unconcerned; after all, jaundice is sometimes common in newborns but resolves naturally. But when her son was still jaundiced after two months, J.B. and her sister-in-law began to worry. According to Insider, this led the pair to Google. It was through this research that J.B. discovered biliary atresia.

You see, J.B.’s son was not just jaundiced; he was also passing pale stools. Searching for those two symptoms together brought her to the potential biliary atresia diagnosis. While her son seemed otherwise healthy, J.B. didn’t want to wait. She immediately planned a trip to visit the doctor the next day. After running some tests, doctors told J.B. to go to the hospital early the day after.

Without treatment, biliary atresia can be fatal within the first two years of life. However, infants can undergo the Kasai procedure. This surgery removes blocked bile ducts and replaces them with a small part of the infant’s small intestine. Ultimately, this helps the infants have a functioning bile duct system. The Kasai procedure is effective, though it must be performed within 3 months (~90 days) of birth. At the time J.B. went to the hospital, her son was 80 days old – just 10 days away from the deadline.

What is Biliary Atresia?

Doctors are not sure exactly what causes biliary atresia. However, the general consensus is that the condition results from bile ducts which are damaged in the womb or shortly after birth. Biliary atresia is a congenital childhood liver disease in which bile ducts within and outside of the liver are damaged, blocked, or scarred. Normally, bile ducts carry bile to the gallbladder. In biliary atresia, the bile cannot travel. As a result, it accumulates in the liver, causing damage. This condition affects females slightly more than males. Symptoms, which typically manifest within 2-3 weeks following birth, can include:

• Dark urine and pale yellow, white, or gray stool
• Jaundice
• Enlarged liver
• Abdominal distention
• Failure to thrive
• Poor weight gain
• Irritability
• High blood pressure
• Liver scarring/loss of liver function
• Pruritus (intense itchiness)
• Absent spleen or more than one spleen
• Liver failure

Learn more about biliary atresia.