Biliary atresia

[Leef]

My baby was diagnosed with BA at 2 Months. We are a week post kasai and bili levels are higher than before surgery. Has any one had experience with this and not needed a liver transplant?

[Ktleesond]

Hi Leef. I am so sorry to hear about your son's diagnosis. My son was diagnosed at 2 months too. He is now 6 months and doing well considering everything that he has been through. I was told that it can take a few months for the levels to 'normalise' so try not to worry too much yet. It is so soon after the kasai for anything to be certain yet. Have his stools changed colour? That's always a good indicator.

[Leef in reply to Ktleesond]

His stools were green right after, then a dark brown. Now they are a light Brown tanish color

[Ktleesond in reply to Leef]

That's really positive. They are really dark at first but then they go lighter. I was told as long as there is some pigment there not to worry. Unfortunately it's a waiting game for the first few weeks (and after that really). My son used to have weekly blood tests and now it's monthly. It does get easier. Are you based in the UK?

[Leef]

Thanks for that, that makes me fell a little better. No I'm based in the US

[Hidden]

Dear Leaf, If you would like any information on BA please let me know or you can go to

childliverdisease.org where we have lots of information and support

Kind regards - Jacquie

[SethB21]

Hey I am in the US as well and my son is 2 months post kasai. He had kasai at 19 days old and his bili was higher a week after surgery and even higher a month after. Now two months have past and his levels have started to come down a bit.

[Leef in reply to SethB21]

That is reassuring. We're your son's stools ok during the time the bili was high? How were the other lfts?

[lmedal]

Hi, my daughter was 57 days when she had kasai and now she’s 1 month post kasai. Her bili was going up and down in the first 2 weeks, ranging from 2.3-3.1 mg/dl. I’m also at the wait & see phase so hope for the best for our babies.

[Leef in reply to lmedal]

Praying for you and your baby!

[M45984371]

Hi, our daughter had a kasai at 14 weeks and the following 6 weeks were spent watching her struggle to bring the levels down. Every day a stress filled nightmare. She is now 11 years old and fit as a fiddle with no need for a transplant. Get as much help and counselling as you can during this very difficult stage. Each case is different, but there is hope.

[Leef in reply to M45984371]

Thank You! Do you remember how she was during those 6weeks? Was she still gaining weight?

[M45984371 in reply to Leef]

She did gain weight, although she also had a large amount of ascieties removed at the time. Once we left hospital she was tube-fed for a further 12 months. By week 5 post-kasai she had no reduction on the bilirubin levels and we were looking at a transplant. Week 6 things dramatically recovered. We were at the Kings College hospital in London, wonderful team there. Best of luck and make sure you get support and rest, its a long haul.

[Leef in reply to M45984371]

Thank you! I hope we see some improvement soon!

[BelindaJade]

I keep seeing everyone's bilirubin levels quite low in comparison with my daughter's. They were well in the 100s, CB of 134 on day 5 after birth I think. we are 11 days post kasai and she was 4 weeks old on friday and her total bili is 94 and conjugated bilirubin makes up 90 of that. She did have the embryonic form of BA though. We should have our liver biopsy results by Friday at the latest but hopefully tomorrow.

I hope your baby does well x

[lmedal in reply to BelindaJade]

Hi, I believe we use different units? I use mg/dL so it looks so much lower compare to umol/L. In umol/L, my daughter’s latest CB (3 weeks post) was about 39. I’ve talked to someone who’s child had CB of 250s but now all the liver numbers are normal. Hope you don’t feel discouraged because of the high CB your daughter has. She got treated the earliest possible which gives more hope. All the best for your baby!

[scoopst]

It hurts my heart to hear people dealing with this. Try and keep positive and work with the doctors and nurses who know how to care for our children. Our daughter had a kasai but it didn't work. She then had a liver transplant at 7 months old. She is now 4.5 and is healthy and thriving (albeit a difficult 4 year old).