[tri-med] Baby Faith and surgery

Kristin,
Thank you for your input. I have looked on web sites about babies with
omphaloceles (not trisomy) and I think that it said 90% are fine after
treatment/surgery. A small omphalocele happens in 1 in 5000 births
(according to what I have read). But I have a hard time comparing that to a
baby with Trisomy 13 because it is different.

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?

Did any of you out there have a baby come out that needed to be intubated
right away and then went through surgery and survived and came home?

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"? I find this uncertainty and decision making process so difficult
-especially when my husband and I disagree. I don't want to give up on her,
but I also don't want to be unrealistic & I don't want her to suffer only t=
o
die in the midst of it.
Thanks for you support and suggestions.
Wendy



On 10=8030=8002 7:32PM, "Madjake00@xxxxxxx" <Madjake00@xxxxxxx> wrote:

> In a message dated 10/29/02 9:39:28 PM Eastern Standard Time,
> wendyhagen@xxxxxxxxx writes:
>=20
>=20
>> The neonatalogists told us that she could no=3D
>> t
>> survive for very long with the omphalocele because of the loss of fluid =
and
>> risk of infection and that he is not sure if he could find a surgeon tha=
t
>> would perform the surgery on a Trismomy 13 baby.
>=20
> Wendy,
>=20
> If you and your husband do want to have Faith treated like a normal baby,=
 you
> should definitely contact Dr. Carey, or someone who can give you the name=
 of
> a doctor who will do the operation.  There are children without t-13
> diagnosis who are born with omphaloceles and are operated on immediately =
with
> no complications.  And it sounds as if the things they are seeing on the
> ultrasound (asd and cleft palate) are not life threatening and can be
> repaired, so I hope they don't give up on your baby.
>=20
> My daughter is t-13 mosaic and has and asd and is just fine.  It is small=
 but
> is still there and has not closed at two years of age, and is not affecti=
ng
> her at all.  I hope that you are able to get all of your wishes for your =
baby
> carried out, and if you need my daughter's case to help convince them of
> this, please don't hesitate to email me.  I will be thinking and praying =
for
> you as I know firsthand how difficult these decisions are.
>=20
> 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/
>=20
>=20
>                 Building ___ooOOoo__ Rainbows
>                      www.trisomyonline.org
>                 Families Helping Families On-line
>=20

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

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