Kasai in Bangkok

[Dominic1975]

We found out our baby daughter had BA at 45 days and she has recently had a Kasai operation at Siriraj Hospital, Bangkok (the surgeon here does 1 a week as its the central hub for Thailand)It is going down but slowly. Can someone tell me what bilirubin level to expect post Kasai?

She is 2 weeks post surgery and her Biliribin is 5.2 (before 11/12) and GGT is 598 (before 1000+). Her poo is bright yellow.

We had all the pre natel checks and my wife even had a blood test but it found nothing untoward. My thoughts are I can't remember ever hearing about this in the Uk (we have 3 other kids) and I wondered if others have similar experiences i.e. did your doctor ever check for this? Does anyone know if this is part of a required post-natel screen - do doctors actively look for this condition? We have had to learn a lot very quickly.

My other question is when we finally get her home how do you separate a common temperature out from a temperature related to the Kasai operation? Should we alway go the hospital whenever she has a temperature or wait to see if it goes down after a few days.

Thanks,

Dominic

[M45984371]

Hi, sorry to hear you are going through this. Happened to us 14 years ago, and our daughter is fit and well with no liver transplant. The good news is that you have had the operation within the first 6 weeks of life, ours was at 14 weeks and was touch and go.

I can't advise on Bilirubin levels.

Here in the UK checks should be done by those caring for you after birth, heath visitor etc. Our health visitor dismissed our daughter turning progressively yellow, as a "need to get out in the sun light". We successfully sued the health trust for that omission.

Biliary Atresia is fairly common in the UK and the level of care here is very good. If your child has a temperature, you should immediately contact your hospital team, and not "hope" it is something else.

Our daughter went through 6 weeks in hospital before her levels went down enough to go home.

This experience is very scary, and no two cases are alike. Good luck, and feel free to ask more questions as this forum has a wealth of knowledge.

[Dominic1975 in reply to M45984371]

That's great to hear and I am glad your aftercare is good too but what a disgrace that the Health Visitor didn't pick it up - I hope they are now better trained to spot it early. It was helpful to know how long your daughter was in hospital for. We were lucky as the doctor spotted her yellow colour on a routine post natal check up. When I asked the doctor how it happens he said there is no conclusive evidence as to the cause. I wondered if you had heard any theories? This is our 4th child and the other three were born without any problems.

[MichelleCLDF Partner CLDF]

Hello, thanks for reaching out to us. It's a lot to take in and it can feel quite overwhelming. We are here for you to support you.

Any raised temperature post Kasai should be checked by the hospital to be safe. Your health care providers there will be best placed to advise on bilirubin levels post Kasai . Warmest regards, Kate

[Dominic1975 in reply to MichelleCLDF]

Thanks Kate. Me and my kids are Uk citizens. At the moment we live and are stuck due to Covid-19 from visiting. Do you know of any good travel insurance that would cover a baby whose had a Kasai operation. We plan at some point to visit the UK but we are not covered by the NHS due to our residency status (living outside uk for 6 months). Best Dominic

[Skibud]

Hi Dominic, our son (8) had liver disease from birth. We’d never heard of it b4 this either, it is rare, but later found out that 20 kids a week in uk diagnosed with diff liver conditions. The charity CLDF have been for us & will b for u, a huge support, Michelle has already posted a message to you. They do research into all the liver conditions, produce lots of literature (that NHS doesn’t) explaining everything, support you & your family & put u in touch with other families in similar situation. They were our lifeline in the early days. About 75% of all liver diseases are BA, we found out 2 years ago our sons is something diff, a metabolic disease has caused his liver damage. Here’s the link to their website

childliverdisease.org/

They’re also on Facebook & Twitter.

Cldf launched a yellow alert campaign a number of years ago to inform medics, as it is rare. They have a poo colour chart.

I’m no medic & rusty on the numbers, but at the mo our sons billirubin is 12, which is low, so 5.2 sounds good, don’t know his GGT

It’s great you’ve had good treatment in Bangkok, my sister in law is Thai & has moved to Chang Mai with my brother in law, but she always raves about the healthcare in Bangkok.

Sending u all lots of strength & ask away if have any more questions & id defo recommend contacting cldf

Take care, Julie x