Has anybodys baby have Billiary Atersia
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Category: General Chat
Forum Name: General Chat
Forum Description: For mums, dads, parents-to-be, grandparents, friends -- you name it! And you name the topic you want to chat about!
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41838
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Topic: Has anybodys baby have Billiary Atersia
Posted By: Guest_74646
Subject: Has anybodys baby have Billiary Atersia
Date Posted: 04 April 2012 at 7:04pm
| My baby is 18 weeks old and he has Billiary Atersia he was born without a gall bladder or bile ducts they did his first major surgery on the 2 nd Feb 2012 called a Kasai i would really like to get in touch with some other parents and so far im finding it hard and so lonely knowing anyone with this condition. He will eventually need a liver Transplant |
Replies:
Posted By: Dophy
Date Posted: 05 April 2012 at 7:08pm
| Hey, my baby doesn't have billiary atersia and I don't know anyone who does. I hope you find some support out there, parenting a healthy baby can be hard and lonely enough without extra serious complications as your little one. I came across this forum with parents with children with what your bubs has, although its american it might be good just to talk to others who understand what you are going through too. Where abouts in the country are you in? |
Posted By: Dophy
Date Posted: 05 April 2012 at 7:10pm
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http://www.classkids.org/forum/forumdisplay.php?f=35
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Posted By: Guest_74646
Date Posted: 05 April 2012 at 10:07pm
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Thanks Dophy
we are heading back up to starship next week he is in Palmy hospital now . I just find it hard as this is baby number four and my 3 other children are healthy. He has spent most his life in hospital |
Posted By: Emmi_
Date Posted: 08 April 2012 at 10:57pm
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How did the op go?
My daughter (3m old one) has something wrong with her liver, they have ruled out BA though, but have just been up to starship our our 2nd biopsy (which is being sent to london  )
I found this FB group helpful https://www.facebook.com/groups/158326670869599/ check them out, they are a BA/liver transplant page. At the moment it looks like our daughter may need a transplant in the future but not any time soon (if she continues to go the way she is now) Its so hard to spend so much time away from your other kids isnt it? And living out of a suitcase sucks! We are lucky that we have only spent about a month in hosp, but i always have a bag packed just in case! ------------- 
+1 May 09 Angel 
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Posted By: Kane100839
Date Posted: 04 December 2012 at 10:00am
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Hi Guest_74646 How are you and your son doing? We had the Kasai prcedure at 5 weeks old and then transplant at 5 months, our daughter is now seven months old and doing well so far. We have had some set back however are making steady progress. We are you at in the process? I do see that things started earlier in the year for you but do know that these wee ones all take it at a different pace. We are in Auckland... |