[tri-med] Re: Baby Faith and surgery

In a message dated 10/30/02 11:20:43 PM Eastern Standard Time, 
wendyhagen@xxxxxxxxx writes:


> But I have a hard time comparing that to a
> baby with Trisomy 13 because it is different

I know that the circumstances are different, but so far it sounds like the 
ASD and omphalocele are her biggest hurdles, and those are reparable most of 
the time.

Do you  know where I can find a full trisomy 13 case with a successful
omphalocele operation? I am having a hard time even finding any Trisomy 13
babies with the omphalocele. I did find one story online, but the baby,
Victoria, died at 38 weeks gestation. Who or where is Dr. Carey?

Unfortunately, I don't know of any full t-13 kids with omphaloceles but I am 
sure someone on this list does.  As far as Dr. Carey, he is a doctor in St. 
Louis, MO, I believe, who is probably the #1 specialist on the subject of 
t-13 and t-18, and has done extensive research and advocacy for our kids.  I 
personally have never spoken to him, but I am sure you can get his number 
from one of the other moms.

So many people say,"Oh at least you know about her condition beforehand. At
least you can prepare for it. At least you were not expecting a healthy
child and then at birth you find out she is not." Don't you love the "at
leasts"?

There are a lot of "at leasts"  but I think it's because no one knows what to 
say.  I guess it's better than saying nothing at all.  When I was pregnant 
with Hannah, I most appreciated those who spoke to me as if Hannah was 
already living and as if she was "normal".  I cherished every moment I was 
pregnant with her in case she wouldn't survive her birth, and I am so glad I 
did.  I even went tubing behind a boat (real slow) so she could have the 
experience!  lol

I hope you find a doctor who is in your corner and will listen to you and 
your husband's wishes.  


Kristin - wife to Bryan, mom to 2 year old Hannah - t13 mosaic w/ 
Robertsonian translocation, and Brennan Joseph - 6 months old, in Atlanta, 
Georgia, USA
Come and see us at:  http://hannahclare.homestead.com/


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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