Biliary Atresia

[Cmjohnson]

Hi my son will be 18 years old next month. He had a dx of BA and had a kasai at 8 weeks. Was hospitalized 13 separate times before the age of 2 for cholangitis. After that he has thrived, is 6 ft and 145#, but last week was in patient for 5 days with cholangitis and home now with IV Antibiotics for 2 weeks. The Hepatology dept came in and said that all BA patients end up with liver transplant. I’m totally freaked out because he has been doing so well. Are there people with BA that are older without transplant???

[Ktleesond]

Hi my son was diagnosed with BA only 4 months ago. He is doing well now but I worry that he will need a transplant at some point in his life. The worry is sometimes unbearable. I hope that it's not for many many years but there are so many positive stories where BA children have had transplants and are still thriving. They give me hope. That said I have also read so many stories (on here) from people who are well into adulthood and have not needed a transplant. I think that the fact that your son has done so well for so many years is really positive and I hope he continues to be well. Your story too has given me hope for my little boy.

[vint]

Hi.

Sorry to hear things are not going well for you guys at the moment. Our daughter has a similar story of Kasai only, loads of cholangitis in the first few years then healthy. she is now 13 years old.

I know of a number of people who are adults with Kasai only. 1 lady has had children. I also know of two guys who were OK till late teens then 1 had cholangitis but treated and OK, the other has now had a transplant but is doing well.

To say all BA guys eventually have a transplant is a general sweeping statement. Does this doctor know all BA adults all over the world! Sounds like he/she needs some training in bedside manner!

Stay strong.

Hope and hugs

X

[Hidden]

hi, no one can say if your son will need a transplant, there are adults in their 30s and 40s still with kasai only. But these are in the minority, however, the advances in medicine means that liver transplants are very successful these days and we have more people willing to donate.

Best wishes - Jacquie, Families Officer CLDF