My baby girl is probably having biliary atresia

My baby was born on time, healthy and beautiful, but very tiny about 2600. in about 2 months old we started to see she didn't have normal skin colour but my GP just ignored my concerns telling us that it's normal for newborn for sometime to have jaundice after they are born, finally I insisted on blood test two weeks after and we got very bad results, rushed to the hospital with Hyperbiliaryumia. We had some tests and biopsy last week and waiting for the results and very scared as they suspecte baby having biliary atresia. I don't know what to think. How to live knowing my baby has this desease ... just need some support and talk to someone about it

Thank you

6 Replies

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  • hi

    Firstly things may not be a bad as you think, you will need to wait for the results of the tests. I am 30 years old i have had BA all my lift. i have lived a next to normal life, i had a kasi operation when i was 9 weeks old and it was successful. get in touch i you want more information.

  • Hello Chrisy, it’s so great to hear of an adult at the age of 30 who has had a kasai procedure, with dx of BA and hasn’t had liver transplant. My son has BA, is 18 now and had kasai at 8 weeks and was hospitalized 13 separate times before the age of 2 with cholangitis. Did very well after 2years of age, grown up 5’11”! But last week had. Bout with cholangitis and was hospitalized for 5 days IV Antibiotics and is home now with a picline Antibiotics for 2 weeks. I’m so scared because his eyes are still a bit yellow. Symptomatically nothing else. Stools normal. We go to see a liver specialist tomorrow. I just hope this all pans out and he can go back to normal life! He’s such a great young man, a senior, plays football and basement, co-ops, and will graduate high school with an associates! So very proud of him. Your story is a true inspiration. Thanks for sharing.

  • Dina aw sweetheart I know your scared but now you have finally got the proof that your baby has this illness she will get the right treatment , we have had ups and downs emotionally , cried a hell of a lot but freddie has had the transplant now , yes there was a few set backs but to the brilliant trained doctors and nurses freddie is doing brilliantly , please be strong on this long road ahead , there will be a light at the end of the tunnel , do you have Facebook contact , I will be hear to talk to if you need to let of steam , I am still emotional as this illness breaks my heart when I see how many babies are getting diagnosed , but don't ever forget as I did for a while how strong they are , I don't want to say any more on here , but I would like to help you more buy listening and helping you with how you are feeling , please look for freddies fight with biliary atresia on face book xx

  • Congratulations on the birth of your baby girl. This is such a worrying time for you as a mum and the waiting for results seems unbearable. The fact you insisted on blood tests shows me you are a strong and determined mum. You will need that inner strength to deal with what's ahead if its BA. I know it seems impossible but try to do something 'normal' like a walk around the local park because just sitting and waiting for the phone call is torture. These first months are in my opinion the hardest but the liver unit and cldf will support you. Our 12 year old daughter has BA and leads a normal life with no medication she was in and out of hospital for the first three years but now only has one blood test a year. Good luck with your little one. Stay strong and determined, always ask questions however silly you think they are. You are your child's greatest supporter.

    Take care and let me know how it goes.

  • Hi our daughter had this and had a kasai at 14 weeks which is very late. She is now nearly 11 years old and in perfect health. The staff dealing with this condition are the best in the world. Your GP should not have brushed you off. Ours did too, and it cost them some money in court. It IS a worrying time, but get as much information and help as there is out there. Best wishes.

  • Thank you everyone for your support and positive vibes, so difficult to talk to people I know coz they simply don't understand ... so priceless to get support from mothers of kids with liver problems or people who experienced it themself ...

    we had laparoscopic Cholangiography last week and it showed its less likely BA but they did another biopsy and still investigating, it has been almost 1,5 month since we realised baby has liver issues... its just a torture to wait for phone call everyday and wait for the final diagnosis, baby started itching couple of weeks ago and doctors still don't do anything to help, just taking more and more tests ....everyday I live in fear that her liver can just fail while we are waiting ....

    Thank you ❤️

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