Living with Biliary Atresia - Children's Liver ...

Children's Liver Disease Foundation

1,993 members701 posts

Living with Biliary Atresia

courage profile image
9 Replies

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.

Written by
courage profile image
courage
To view profiles and participate in discussions please or .
Read more about...
9 Replies
braveboy profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Mgaud in reply to Dineshbatt

Howz your baby now?

Mgaud profile image
Mgaud

Hi! How are you now?

Are you taking any medicine?

You may also like...

Biliary Atresia Boxing!!!

go boxing. He's had a tough year mentally which has left him with bad moods and he feels boxing will

Biliary atresia

My son has biliary atresia. Had the Kasai procedure at 6 weeks old. He’s now 9 weeks old and his...

Biliary atresia

the kasai operation at 6 weeks old. I was the first in scotland to survive after having the kasai...

Biliary Atresia- Kasai

the Kasai procedure done at 7+ weeks. We have been in the hospital now 2+ weeks post op. Her liver...

Biliary atresia going abroad

My daughter had kasai procedure end of June this year for biliary atresia and we are looking at...