Anybody have biliary atresia or has a child who does??????

[kerij]

[Hidden]

Hi, I don't know anyone, however I can recommend the Children's Liver Disease Foundation (childliverdisease.org/) for advice and potential contacts of other people affected by biliary atresia.

[flapper]

i have a friend who would be helpful for you to speak to, i'll pass on the link to this site.

[nicky1986]

hi my daughter has ba!

[kerij in reply to nicky1986]

How old is your daughter mine is 3. Is she still kasai only????

[nicky1986 in reply to kerij]

she is 7 months and kasai only

[wilko11]

My son was diagnosed with Biliary Atresia at 8 weeks old after being told by my health visitor for 6 weeks that his jaundice will clear! He had Kasai at Birmingham Childrens Hospital at 8 weeks and this was a success and helped the bile flow from the liver. Now 8 mths old he is currently on the transplant list and been waiting for 10 wks unfortunately the Kasai operation was not carried out early enough and the damage to his liver was already done.

[nicky1986 in reply to wilko11]

oh no this is a perfect example of the health professionals not knowing about this condition. hopefully you wont have to wait much longer x

my daughter had a bleed in the brain which was discovered at 2 weeks old the surgeons who operated on her brain noticed her jaundice level and had noticed her baby jaundice go and then noticed the jaundice come back they got the ball rolling for us and she got sent to kings college and had her kasai at 6 weeks and the surgeon was very positive and he is not the kind of man to mess around with the truth. we are always in hospital with her brain as they is causing us more trouble and they always test her liver function when running bloods and it always comes back good. my daughter is now 7 months old so only a months difference between our children x

[wilko11]

Whilst in Birmingham (our latest stay was 12 weeks) we have met several children who have had the kasai early and are doing very well. So glad to hear your daughters liver function tests are good. Jack has various problems connected to Biliary Atresia when they went in to operate they noticed he had malrotation (twisted stomach and bowel) and corrected it whilst doing the kasai. Also has polysplenia (7 spleens), got heart defect small hole in heart, he has had ascities several times and had tummy drained. He now has permanent oxygen requirement and also being fed by NG tube. We have spent most of the last 6 months in hospital as he keeps getting cholangitis and had e-coli twice all connected to his liver due to the liver being connected to his bowel. I would love to get involved with raising awareness of Biliary atresia among the general public. I have already done a newspaper article for our local paper. x

[nicky1986]

my daughter had bowel adheasions after her kasai. i want to get involved in raising awareness but im finding it so difficult no one seems to uunderstand how rare and potentionally life threatening it is. health professionals need to be more aware of this as its really down to them to say lets get you seen by someone else before its too late, ive seen too many people who have been in the situation where no one believed them that something wasnt right with their baby and then the kasai ended up being performed too late x