My brave little girl

My beautiful baby girl is 4 weeks old and she's been diagnosed with possible BA and going in for Kasai this Tuesday. I really hope the surgeon would do just the colongiogram and confirm no BA.

I pray for everyone out there with BA and especially the parents like us for more strength and courage to go through these difficult times.

Would love to hear your story.

God Bless

Om

12 Replies

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  • I really hope it's not BA. My daughter was 6 weeks when she had Kasai and is now about to be 11 years old. My story is unique in that her prognosis was very poor but she just turned around. I hope all goes well.

  • Thank you so much for your positive thought. Your daughter will surely have a great future and make you more proud :)

    Are there chances of colongitis after Kasai? What are the symptoms?

  • Yes. There is always a possibility of cholangitis. Nora had it chronically for nearly a year post Kasai.

  • My daughter would run a really high fever without any other symptoms other than pulling her legs to her chest and screaming when she had cholangitis. Xxx

  • My girl had BA in the end and had to go through Kasai last Wednesday. She has bounced back well. We might go home today from the BCH.

    Thanks for the update and symptoms to look for.

  • Hi good luck with everything like you we were waiting results with our 4 wk old as he was suspected ba. The wait was agonising but fortunately for us it turned out to be alpha 1 anti trypsin defiency. The consultants were sure it was ba. So fingers crossed for you and stay strong xxxxxxx

  • Thank you so much for your well wishes. I really hope it's not BA.

    For my girl the ultrasound was inconclusive and biopsy was also not accurate. Her poop is not pale nor her wee is dark. The consultants are sure that everything is showing signs of BA.

    My only hope is the colongiogram to prove the wrong.

    God Bless

  • Hi.

    My little Boy has BA he had the op at four weeks old.

    What signs are making them say BA?

    BA normally causes pale stools, jaundice, hungry all the time and hardly sleeps because of being hungry.

    Xx

  • Hi there, thanks for sharing. I hope your boy is doing well after Kasai.

    My baby's stool looks yellow but has pale texture to it and little yellow on her white part of the eyes. Other than that her blood shows signs of high conjugated bilirubin.

    Tomorrow she is going to have her ultrasound again to check her gallbladder.

    Until then we are in deep pain and agony.

  • Hello I hope that it went well yesterday with the ultrasound? Remember that CLDF is on hand should you need any support or advice. We have a Facebook page for parents facebook.com/families.cldf and a great website where you can download the relevant information childliverdisease.org/ or if you would like to speak to somebody from the support team please call us 0121 212 6023

    Tom

  • Thank you Tom

  • My girl had BA in the end and had to go through Kasai last Wednesday. She has bounced back well. We might go home today from the BCH.

    Thank you for all the support and sharing the pain.

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