BA baby a few days after Kasai Procedure

[hil5usa]

Hello,

My niece was diagnosed with BA a week ago, and she had the Kasai procedure a few days ago (November 10,2020).

We are now waiting for her liver biopsy results (takes 15 days). Her liver appeared to be quite hard, to the surgeon, and she already has fibrosis.

She was born August 24, 2020 and they performed the Kasai procedure on November 10, 2020.

They live in France and were directed to Marseille.

She did have a stool two days, I believe, after the surgery. She is putting on weight and is in good spirits.

We are nervous about how damaged her liver is and if she will need a transplant.

[M45984371]

Hi very similar story with our daughter now aged 14. She had her operation at 14 weeks which was very late diagnosis. The following few weeks were very difficult, as they will be for yours. Have trust in the medics. They will be doing all the monitoring you need. Our daughter did not need a transplant, although the prospect of it being a real outcome was there for many weeks. She still has a damaged liver, but has gone on to thrive with very few problems after the first 18 months. Its a long haul, and I wish you well.

[hil5usa in reply to M45984371]

Thank you so much, for sharing your story. It's nice to hear a positive outcome. I wish your daughter and your family continued success with BA.

[hil5usa in reply to hil5usa]

Hello,

If you don't mind me asking, where was the problem with your daughter's bile ducts?

Was it inside of her liver OR outside of her liver?

Was it a malformation of the bile ducts, a blockage or were the bile ducts nonexistent?

My nice is showing very high levels of bilirubin, Today, 1 week after her Kasai procedure. She is having an scan done right now and may need surgery, again.

Thank you

[M45984371 in reply to hil5usa]

Hi, it was a blockage of the bile ducts outside her liver.

[MichelleCLDF Partner CLDF]

Hello, This sounds like a very worrying time for you all. We can offer you some specific support and information around biliary artresia, please can you fill out this contact form so we can talk to you in more depth? childliverdisease.org/cldf-...

[hil5usa in reply to MichelleCLDF]

Thank you,

I will pass this along to my sister, as it's her daughter who has been diagnosed with BA, and she knows all of the details.

Yesterday's scare was due to an intern's misunderstanding of BA. My sister, brother-in-law & baby niece will be coming home, tomorrow.

However, there is a high possibility that their baby will need a liver transplant. They have not received the baby's liver biopsy, yet, but the liver was hard during surgery and they saw fibrosis in her scans.

Thank you, again

[manhealth]

Hello, Same situation with my 4month old baby.. Liver was found to be hard per surgeon and liver biopsy showed fibrosis... After 6weeks of KASAI, his bilirubin started decreasing.. Still on medics.. Hope the kid is doing good now..