10 years on from biliary atresia

Our daughter was diagnosed at 14 weeks (very late, the NHS Trust paid compensation) She was operated on and the surgeon held out little hope of success. Her ascites got worse, and the only prospect for recovery was a liver transplant. Weeks went by without a donor, by now it was Christmas. It couldn't get much bleaker. Then she recovered. Ten years on she has such a strong chance of never now needing a liver transplant, the good doctors and staff of Kings College Hospital are using her as a case study. Happy to answer questions on all this.

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  • That is a great story to read. Our son had a transplant aged 2 after Kasai at 7 weeks...he was relatively well but after a broken femur and 6 weeks in a near full body cast this brought on the transplant as his swollen abdomen had nowhere to grow. He is now a great, nearly 13 year old boy living life to the full. He plays music, sings, enjoys karting and is doing brilliantly at school. So proud of him after all he has been through. He did have other surgeries in his early years- double hernia amongst others.

  • The one thing we have learnt is how much variance there is in all this. When were waiting for the Kasai to "fix" the problem, we were told unequivocally that she would need a liver transplant by the time she hit puberty. Indeed, there were teens on the ward recovering from their transplants. Sadly one of them suddenly died overnight, which was very distressing and a worry for the rest of us. Why our daughter has surged ahead where others have faltered is baffling, especially to the doctors and support staff. Glad your boy is doing so well.

  • Glad to hear your daughter is doing amazing. Our daughter was diagnosed late also. she had a Kasai at 16 weeks really late diagnosis even after I kept going to see my GP. her liver is very scarred, we then had numerous hospital stays - cholongitis and asities going undiagnosed for months afterwards. Those were really dark times for us but never loose hope! It did get better. She is doing so well now and is a happy healthy social 16 year old!! Typical moody teenager! Wondering how you went about getting compensation ?? We were mentally exhausted then and did talk about all the failing we had along the way, but now I'm thinking why should she not have some sort of compensation to help her future...?? How long did the whole process take and is it traumatic in terms of how much detail we have to give...and to who?? Thanks

  • Hi, all sounds familiar.

    We used Mayo Wynne Baxter solicitors, experts in medical negligence. Had Legal Aid, which is the only way we could have afforded it. You would need to ask if Legal Aid is still available now. We sued the NHS Trust that should have noticed how yellow she was at 6 weeks, and dismissed it as her needing a "bit more time in the sun".

    Ultimately a doctor and health visitor both failed to take any action, and our daughter was paid for her pain and distress. The total paid out was less than £25k which is not a lot, but has been invested for her when she hits 18.

    The process started when she was about 18 months old and a decision was finalised when she was about 3. It is gruelling as you have to revisit that time and go over it all in detail. My wife's health collapsed partially as a result of the whole experience.

    I would suggest you seek legal advice on taking action as there was neglect, but, especially as quite a few years have passed, and, crucially your daughter's outlook is so positive now. When ours was 18 months old she was still being fed through a tube.

    Best of luck and feel free to ask further questions.

  • Thank you so much, will defo seek advise, our daughter also had the feeding tube. I can relate to your wife in that her health collapsed, hence why i was so reluctant to sue at that time. Our children went through such a lot for a young age and all through negligence. I am a firm believer that even with the experiences she's had its made her into such a loving and caring person who wants to work as a paediatrician. Wishing you and your family all the very best!

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