Living with Biliary Atresia

[courage]

Andrew is 10 years. He's only had a Kasai. He has portal hypertension, a big spleen which is still growing and recently we've been told he now has a large nodule on his liver which means attending hospital every 3 months. None of this stops my son from living the life he wants. He belongs to a football club and a running club. He has more entergy than anyone else in the house and takes his sport seriously. All his commitment over the last year has rewarded Andrew with reaching 7th place in the country over a 5km run. So what if his liver function tests are not normal. You would never believe it if you watched him run. He lives every day to the full and he's taught me to do the same.

[braveboy]

Great story, my son is 8yrs old and much the same as your son, he never stops, well done to them I say, keep going Boys!!!

[courage in reply to braveboy]

Hello. Thank you for taking the time to read my post and for your kind message. it's good to hear your son is keep well too and full of life. Best wishes. Karen (Andrew's mum).

[Victoria2]

I'm glad your son is doing so well with his running ,great for his self esteem. And great for you as a parent as some parents can try to wrap sick children in cotton wool which can be sufficating, so kudios to you as well. 7th place in the whole country over a 5km race is pretty impressive, I hope his liver stays well enough so he doesn't get the extreme tiredness. Does he get cholangitis at all?

[courage in reply to Victoria2]

Hello. Thank you for reading my post and for your kind message. Andrew has never had cholangitis. We had a few scares during his first year after birth, but I think our local hospital was just being careful. Best wishes. Karen (Andrew's mum).

[cherub]

My son has Biliary Atresia and like Andrew has only had the Kasai. He is 18 now and still living life to the full like your boys, I was one of those mums who could so easily have wrapped him up in cotton wool. I think it is so important they have a good quality of life, and if your boys are anything like my son they will grow up very quickly and have great awareness of what is going on around them. Good luck with the running. They are all so special.

[courage in reply to cherub]

Hello. Thank you for reading my post and for your kind message. I'm so glad that you told me that your son is now 18 years and still doing well on a Kasai. It gives me great hope for Andrew. Thank you for contacting me. Best wishes, Karen (Andrew's mum).

[Dineshbatt]

Hi, my baby is struggling to get out of this problem now she s 1 yr post Kasai and her bili is 12 now

Can you pls share your experience how long this s gng to be.

[Mgaud in reply to Dineshbatt]

Howz your baby now?

[Mgaud]

Hi! How are you now?

Are you taking any medicine?