After Kasai Procedure

[Twiin]

Hi, my son was operated 02/06/18. He have shown no physical signs of improvement or signs of getting worse. His bilirubin and LFT are still high and he was just evaluated to see if he is a good candidate for a transplant everything checked out fine. I was wondering If there was anybody child who liver function improved before the transplant or there is no chance and that transplant is our only option?

[Hidden]

Hi Twiin, we were in the same position 3 yrs ago with my Daughter Tiffany... her Kasai never showed signs of improving, and transplant was our only option. She was transplanted 6 months later and now lives a normal life. I know it's not an answer to your question, but I hope it gives you some hope that transplant isn't the worse case scenario..

[Twiin in reply to Hidden]

Thank you

[kamranzaheer in reply to Twiin]

who was the donor ?

[M45984371]

Hi. Our daughter had a kasai at a very late 14 weeks. She did not respond properly and was listed for transplant. There was then a very painful 6 weeks that followed as no donor was available. Things got to a real crisis point, and then she did improve dramatically. There was no real explanation for this, but was a great relief all round. She is now nearly 12 years old, very healthy, and has had no major events since then. Every case is unique in this area of health, but our experience is that anything is possible. It should be said, reading people's comments, that many children go on and thrive after a transplant, stressful as the whole experience is. Wishing you best of luck.

[Twiin in reply to M45984371]

Thank you. Another question how did you go about transitioning your baby to solid food at 6 months old? Did you have to provide a special diet?

[M45984371 in reply to Twiin]

Hi, she didn't progress to solid food and was fed through a tube with a medical formula for so long that she had to re-learn how to swallow and eat. This process took 12 months. You need medical advice to a find out how to avoid this function if at all possible, as it was very stressful feeding a tube attached to a pump through her nose into her stomach every day. In the long run she moved onto solid food with no problems. Not a concise answer to your question, but our experience.

[Twiin in reply to M45984371]

Ok.... Understood... See my little one has been fed by mouth... After the kasai only for a few days they fed him through a tube... Thanks anyways... How old is your daughter now?

[M45984371 in reply to Twiin]

She is nearly 12, very well, and can run 1500m in just over 6 minutes. Basically fit and suffering no long term problems, so far.

[Twiin in reply to M45984371]

Ok good to hear.. Thanks

[Sumaiyadil13 in reply to M45984371]

How is ur baby now. Liver transplant was done or not?

[Kimba3]

Hi Twiin,

My son had his kasai at 4 weeks (on 29th Dec 2017) and it took approx 3 months for the bilirubin to be ‘normal’. His LFTs are still quite high now at 6 months old but they’re coming down slowly & the medics are happy with his progress so far.

Would they give your little one more time to see if the kasai could still work? We were told they’d know if the kasai has worked within 3 months, but they’d give it up to 6 months.

Wishing the best for your little one, whatever happens.

Xx

[Twiin]

Thanks. Well as of right now we haven't heard from the transplant team... So we are continuing as is... Today June 6 will be exactly 3 months since the surgery... Another question how did you or is you going to introduce solid food to your little one?

[Kimba3]

We’ve just started weaning him in the past couple of weeks. We were told to just wean him as normal so that’s what we’ve been doing. We will see the dietician in a couple of weeks so not sure if they will have anything else to say about weaning.

[Twiin]

Ok thanks

[Umie]

hy with my daughter it wasn’t clear after her kasai so 2022 i just decided to donate to her and she is fine now so i think transplant helps a lot