Biliary Atresia 10 month Update

[Leef]

Hi all! I was lead to this website when my son was first diagnosed with Biliary Atresia at around 2 months of age. I asked questions on here and received tons of support from those who's children were in the same boat as mine. Knowing how comforting it was to see others going through the same thing, I wanted to share my son's updated condition to possibly do the same for someone else! My son had his Kasai done on November 6th 2017 at 70 days old. Immediately after surgery (and for about 3-4 weeks after) his bilirubin levels continued to rise, concerning myself and his doctors. This prompted us to get referred to a transplant center. However, around month 2 post Kasai, my son's bilirubin levels began to drop steadily. Today, my son is 10 months old, meeting all his milestones and is a happy baby. We have recently been deactivated on the transplant list as well. I do not have my hopes up, as I know we are not out of the woods and anything can happen at anytime but I am so grateful that he is improving and is a happy, growing baby. His bilirubin is 2 and has been staying here for about 4 months now. We have had issues with weight gain and itching but medication seems to be helping with the itching and he is slowly but steadily gaining weight. I want to thank everyone again for all our your kind words and if anyone has any questions please feel free to message me!

[vint]

Thats fantastic news. Thanks for sharing your story. Our daughter is 13 years old and had it rough in the first 3 yeara but now leads a very full life.

Take care

Hope and hugs

X

[Pencek]

Glad to hear about your lil ones progress. All the best to you & him. TC xx