How soon to know if Kasai procedure was successful

[Angie46]

My cousin’s baby has BA- the doctors knew something was wrong when she was 2 days old and she was transferred to Children’s hospital where the BA was confirmed. she had the Kasai procedure when she was 2 weeks old- and now she is 2 weeks status post procedure. Everything Seemed to be doing well at first and thought she would be coming home this week, unfortunately her bilirubin and liver functions became more elevated, she has been unable to keep much down after her feedings, was not gaining weight And becoming dehydrated so they put the feeding tube back in this week. She has been told that it could be a few months before it is determined if the Kasai procedure was successful- can anyone give us advice on how long it took for you to know the procedure was successful and how long it took for the bilirubin and other liver functions to level out- if this is all expected or if this should have resolved immediately after surgery- she is still very jaundiced and we are wondering if all this is normal so soon after surgery and it just has not been enough time for her to improve or from your experiences should her bilirubin, liver functions and jaundice resolved by now? Even though she is at children’s hospital they do not see many cases of this and the surgeon had only performed 5 procedures himself - I just want to help my cousin make sure the right questions are being asked and help support her the best way I can. I have researched but could not find the answers to how soon after surgery should she be improving. I’ve read a lot of your stories and it gives hope but I have not seen anyone post with experiences with BA and Kasai procedure at this young age - any information anyone could give will be very appreciated!

[Leef]

Hi angie46! My son did not have his kasai as young as your cousin's baby (70days), however after his surgery his bili levels and liver function tests were higher than they were before surgery. About a month after his kasai they were not showing signs of improvement so we were transferred to a transplant center. It wasn't until about month 2 after kasai did his numbers start to go down. We were also told that it will take a few months before knowing whether or not the surgery worked. He is now 1 and still seems to be doing ok. This is a very successful road but I've heard lots of success stories after kasai and even after transplant so please don't lose hope! Let me know if I can answer any questions!

[Raooohxc]

After learning more over the past month. We had the kasai done on June 26th and have only been home about a total of 2 and a half weeks but my baby we were told had the most advanced scarring to her liver for a baby her age. Normally they say it takes about 3 months to determine if it is working but our babys liver was telling them a month and a half sooner with the chronic ascites and constant wacky blood levels. We are now being evaluated for a liver transplant but don't let this get your hopes up as I said our baby had severe scarring the kasai typically last for a few years to even longer depending on the liver and the way it is taken care of through the life of the kasai. Our baby has too much fluid build up so we will spend the entire time in the hospital until we get to transplant day. Like I said don't let this get your hopes up. Prayers for all the babies

[Lois-Cldf Partner]

CLDF can offer support and advice. You can start by looking at our website childliverdisease.org Are you based in the UK? - Lois x

[SusanB2412]

Hi, stay off Google is the best advice we were given. My granddaughter had the Kasai procedure last year and she's now 10 months post op and is completely meds free for the first time in her little life. She had the Kasai done in Birmingham children's hospital at 39 days and it's true what they say, every single case is different. So far we've been lucky no cholongitis, constant reduced bilirubin levels and no further hospital stays. I hope you get a Happy outcome to your situation I truly know how worrying and stressful it is. Good luck!