Biliary atresia

[Dharmprakash]

My daughter is diagnosed with biliary atresia when she was 8 weeks ( 9th July 2018 )old . Doctor has suggested the Kasai operation on 14th August. Earlier her bilirubin was 12 but now it is 7.5 . Doctor informed us success rate of this procedure is only 30%. I am very anxious .

[M45984371]

Hi My daughter had hers at 14 weeks old, and the following six weeks were very difficult. I don't know where the 30% success rate comes from, so it may be worth getting a more optimistic outlook for success. Ours was carried out in London, at Kings College Hospital, and was eventually successful. Our daughter is now 12 years old and fit and well so far.

Worst case, if the kasai fails a liver transplant will have to follow, and these are proving successful in any case. Best wishes at this difficult time.

[Dianamed in reply to M45984371]

Great to hear I love hearing success procedures we are 11 days after surgery and still in hospital so reading this makes me happy.

[Lois-Cldf Partner]

You can get information on our website. Childliverdisease.org

Its always a good idea to get as much infomation as possible!

[Pencek]

Being anxious is understandable. Be kind to yourself & stay strong! Not sure why the doctor is waiting this long to do the Kasai... the sooner done the better it is. Did they do a cholangiogram to confirm their diagnosis of BA or just a HIDA scan? My daughter had her Kasai at 7+ weeks, we are still in the hospital 25 days post surgery. Not everyone stays this long.

Hope your daughters surgery goes well. All the best.

[Dharmprakash in reply to Pencek]

They have done HIDA scan

[Pencek]

Ok. Have they discussed it with you, I.e if they will be doing s cholangiogram first when they start the surgery and then upon results from that proceed with the Kasai or not depending on the findings?

[Dharmprakash in reply to Pencek]

Yes , they will do cholangiogram before the surgery.

[Pencek in reply to Dharmprakash]

Hope it went well & your daughters doing ok.

[Dharmprakash]

Yes , surgery went well & she is doing good.

[Pencek in reply to Dharmprakash]

Happy to know she is doing well. Keep me posted on her recovery.

[Dharmprakash in reply to Pencek]

Now she is shifted from ICU to general ward and she is doing good .Can u tell me what should be the Color of stool initially.

[Pencek in reply to Dharmprakash]

That’s great... happy she is doing ok. It should ideally have some color... not white or pale if that’s what she was having earlier. But with lots of kids good bile flow coloring the stools to mustard yellow, green or greenish yellow even brownish takes some time and sometimes it gets darker and lighter in phases too. So don’t let that worry you too much... the overall trend of her direct bili, color of stools and weight gain should be good.. little ups & downs don’t matter in the long scheme of things. What are her bili levels now? Remember they sometimes do go up right after the surgery and then the downward trend starts. Hope she gets better every day.

[Dharmprakash in reply to Pencek]

Thanks Pencek. Yesterday stool color was green , today it’s turned brown.

[Pencek in reply to Dharmprakash]

That’s great!

[Dharmprakash in reply to Pencek]

Today she is down with fever & stool color is now white

[Pencek in reply to Dharmprakash]

What did the doc say? Too soon for cholangitis I reckon? Is she on bactrium or another antibiotic prophylactic?

[Dharmprakash in reply to Pencek]

She is on antibiotics ..Doctor is saying it’s infection

[Pencek in reply to Dharmprakash]

Hang in there... cholangitis I have been told can be taken care of with IV antibiotics... I reckon the docs must be giving her those. Take care

[Dharmprakash in reply to Pencek]

Hi Pencek , Hope your daughter is doing good.My daughter is recovered from fever but doctor told me she is having ascites. I have no idea what is this & how many days it will take to cure & why this happen.

[Pencek in reply to Dharmprakash]

Hope your lil one is doing ok.

[Dharmprakash in reply to Pencek]

We have discharged from hospital but stool color are still pale , sometimes brown.

[Pencek in reply to Dharmprakash]

How are her labs & weight gain? Is her ascites better now?

[Dharmprakash in reply to Pencek]

Bilirubin is 7.65 as earlier ..ascites is better now ...but stool color is still pale. How is your daughter.

[Pencek in reply to Dharmprakash]

Are her rest of the labs getting better or no change to them? Sometimes it takes quite a few months to see if Kasai is working. Is she gaining any weight? What are your doctors saying? Have you been referred to a transplant specialist?

We were also recently discharged after 45 days... my daughter is ok.... we will be meeting a specialist sometime soon and then will know how she & her liver are really doing. Until then it’s all a work in progress.

Much strength to our lil ones!

[112adsd]

Which hospital are you in Dharmprakash if you dont mind sharing.

[Dharmprakash in reply to 112adsd]

I am at Christian medical college , vellore (india)

[Dianamed]

Did you get your Kasai done? I’m 11 days post the operation and we have had our ups and downs but ultimately doing better now.

[Jampotjim]

Hey, so my son had his kasai @ 9 weeks and after a nightmare 6 months including the kasai tearing where he got sepsis and was in ICU for over a week and was in hospital for 6 weeks. after this he has been amazing, thriving, he is now nearly 3 and his liver function is normal and he is a lively, strong and unbelievably strong minded kid.

The UK have some amazing support as we flew over to have the kasai from Ireland

Yes there are the ones who need a liver transplant and you will deal with this when and if it happens but there are so many success cases and so far my son is baffling his doctors and is only getting yearly checkups going forward as his liver function is exactly the same as a normal kid.

[Ja3fer7abeby]

When ggt will be normal after kasai