Are there any mothers out there whose child was able to avoid liver transplant with kasai not successful initially? My son is 1 month 5 days post-surgery and docs are making a safety plan for transplant since his lab results are not showing improvement with pre-surgery results. His kasai was done at 2months 11days.
I am curious if there are others on here with similar situation where baby eventually made a turn around within 3months or so post kasai?
My son’s stool hasn’t changed color to yellow at any point after surgery. Another indication of “failure “ of procedure.
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Heyladydee
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Hi, unfortunately my Daughter did go on to have a live liver transplant at 7 months old, (kasai carried out at 7 weeks) I do know of several families who at the time of ours were going through the same, and have got to now (2.5 yrs) just having kasai... my wife does have a fb group for liver patience and families.... there are loads of people from all different backgrounds on there. I could get you the name if you wish??
She's doing well thanks, I will get the details for you, or you can message her direct for details?? Her Name is
Dee lothian. She has built up a massive network of support, and does a lot of awareness for organ donation. If you Google my daughter's name.. Tiffany lothian you'll see her story. My 21 yr old niece gave her a bit of her liver! Let me know what's best for you??
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I'm not sure but I think it's called uk liver parents and families..... I'm not 100% though but try that and if not message her direct... I'm not on fb so can't look for you, sorry 😖
I am in the group on FB now, thank you much! The name was correct btw 😁
Happy belated birthday to your daughter! 💕 ironically, i’ve always been wanting to be an organ donor when i learned of it. With my son in this condition I will make sure to have my drivers license updated as donor again. I’m in the US and that’s an option here.
Thank you again for your help! I totally love this group! And will feel the same with FB group!
This Group is fantastic and the CLDF as a whole have been there for us through out. I just feel the more support you can get the better! X
Hi, it is UK liver parents and families. I hope you son is well and and if you need any information please go to: childliverdisease.org/ where you can download information for free.
Hi, our daughter had a kasai at 14 weeks (very late in kasai terms), and for 6 weeks after there was no improvement, and then miraculously she turned it round, and the planned liver transplant was dropped out of the equation. There was no explanation as to why she recovered at that point. She is now nearly 12 years old and has had very few problems since. Each case is very particular to the child, and you will have to go with your medical advisors. Of course many post -kasai children do have to have a liver transplant, and it seems the majority thrive on it as a result. It is a very difficult thing to contemplate, but the transplant may be the best long term (and vital) option. We are in the UK and were treated at Kings College Hospital London.
Thank you for your response! This brings a little comfort knowing there’s still time for my baby to start showing results from the kasai. He’s been having darker stools but pediatrician says it’s still grey. I’m just hoping we will see yellow stools more(we had a yellow one a few days back).
I am glad your daughter is well! Sending love from the US!
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