My baby Tiffany

My Daughter Tiffany was diagnosed 2 days ago with bilary astretia. . She is so small at 6 weeks old. She is due into King's college hospital today and I am 1 scared Daddy... I haven't eaten slept or stopped crying for the weekend. What is next for us???

[Hidden]

I'm so sorry to hear about your daughter Tiffany. I don't know what's next for you all - our son has a different liver condition - but I do know that the team at King's is really good. If you have questions just ask. They have specialist nurses as well as doctors, dieticians etc. It is a scary time when your baby is ill but the team is there to support you too. Good luck to all of you.

[Sleaford]

Hi, I can fully appreciate how scared, worried you are, I think anyone who goes onto this very useful website has been in similar situations including myself. Though I cannot comment on your daughters condition as my sons is a total different BUT I can say that Kings College is the best hospital for her to be treated in - their expertise is recognised all over the world. Our son has been treated there for nearly two years now and his illness was a complete shock as no doubt as your daughters was. I know your in 'no mans world' currently and its a very scary place to be. I am sure by the end of today you will have a much better idea of the road ahead, wishing you all the best.

[vint]

Sorry to hear your little one has BA. It must be a real shock and you have a difficult time ahead with her having lots of tests, a kasai etc but Tiffany needs you to stay strong and give her all your love. My advice would be trust in your liver team and your self.

Our experience was the first few years are the hardest both physically and emotionally as you adjust to a different life to the one you expected for your baby.

Our beautiful ten year old daughter lives life with Biliary Atresia. She sings in the county choir, is top of her class at school and plays 3 musical instruments. She had her kasai at exactly 6 weeks old and still has her native (own) liver.

Get the info on BA from the cldf and ask any question however small or stupid it may seem of the liver team and cldf. They really won't mind. Remember if you do look up on Google etc some info is out of date or is about countries who are not as lucky as us to have specialist centres.

Our thoughts are with you. Please keep posting and let us know how you are all doing.

[Hidden]

Thanks for all your support and posts.. she had her biopsy today so now we're waiting.... it's so nice to know we're not alone x

[Blazer]

Hi my son was two a few weeks ago and was diagnosed with biliary atresia at 10 weeks and had his kasai at nearly 12 weeks. Pleased to report that he is doing well and is a mischief maker!

I remember the early days well and how scary they were. Kings were brilliant with us through the whole thing and they are still fab now, should I have any concerns.

If you are on Facebook there is a group called liver mums ( a number of dads are members too) and I have found it a godsend and a brilliant support network. The Childrens liver disease foundation are also great and have some well written literature which explains things really well.

Wishing your little girl all the best.