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Biliary Atresia



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amother


 

Post Wed, Jan 09 2008, 12:36 pm
Does anyone have any experience with biliary atresia? Or perhaps know anyone who does?
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chavamom




 
 
    
 

Post Wed, Jan 09 2008, 12:49 pm
That's strange you bring it up. A few weeks ago I had a pt. that had it. Not the infant, but the mother delivering. She had not had transplant, but had had surgeries as a child to deal with the issue. She had increased liver problems as a result of the pregnancy and she opted to get her tubes tied after delivery as future pregnancy could put her in a state of needing a transplant. That's pretty much my limited experience.
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amother


 

Post Sun, Aug 29 2010, 1:47 am
Anyone have experience, a niece of mine was diagnosed, and it seems like she'll need a transplant. Sad
Anyone know of support groups for the parents?

Chavamom, I find it encouraging to hear about a woman giving birth, having B.A.
I wonder if there's a difference in the case where the child does get a transplant.
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happyone




 
 
    
 

Post Sun, Aug 29 2010, 7:22 am
I know two people with it. Both were transplanted. Contact Chai Lifeline at 212-465-1300 they will connect you to several families that have been through it.. Both children I know are doing amazing.
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amother


 

Post Sun, Aug 29 2010, 9:17 am
happyone wrote:
I know two people with it. Both were transplanted. Contact Chai Lifeline at 212-465-1300 they will connect you to several families that have been through it.. Both children I know are doing amazing.


Thanks happyone.
How old are the children. Were they transplanted when they were babies? I would just like to tell my sister some encouraging stories.
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happyone




 
 
    
 

Post Sun, Aug 29 2010, 11:40 am
Do you want me to ask if they want to talk to your sister? One of them I think would be willing. Yes, both were transplanted as babies. First they tried a different surgery on one and then went to transplant.
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amother


 

Post Sun, Aug 29 2010, 12:47 pm
amother wrote:
Anyone have experience, a niece of mine was diagnosed, and it seems like she'll need a transplant. Sad
Anyone know of support groups for the parents?


amother, my brother has it and was just transplanted 2 months ago. he has bh recovered amazingly. in fact, I was the one who started this thread. my mother never did find a support group but she'd love to talk to your sister and share any info she has. I dont want to post her number on the forum, but if you email me at davenforyou@gmail.com I'll give it to you.
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amother


 

Post Sun, Aug 29 2010, 2:17 pm
Excuse my ignorance, but never heard of such a thing... Can someone please tell me what it is? What transplant is needed?
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amother


 

Post Sun, Aug 29 2010, 7:23 pm
amother wrote:
amother wrote:
Anyone have experience, a niece of mine was diagnosed, and it seems like she'll need a transplant. Sad
Anyone know of support groups for the parents?


amother, my brother has it and was just transplanted 2 months ago. he has bh recovered amazingly. in fact, I was the one who started this thread. my mother never did find a support group but she'd love to talk to your sister and share any info she has. I dont want to post her number on the forum, but if you email me at davenforyou@gmail.com I'll give it to you.


Thanks so much for the update,I will speak to her first. They live in Israel.
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amother


 

Post Sun, Aug 29 2010, 7:25 pm
happyone wrote:
Do you want me to ask if they want to talk to your sister? One of them I think would be willing. Yes, both were transplanted as babies. First they tried a different surgery on one and then went to transplant.


Thanks so much for the offer.

Are they in Israel? I will need to speak to my sister first.
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