[tri-med] Re: trisomy 18, omphalocele / trisomy 13 omphalocele

Hi Wendy, my name is Nancy I have a 5 month old baby boy with full t-13.  He 
was born with an omphalocele.  When they first found out I was 24 weeks 
pregnant and they told us the same thing, that he wouldn't survive long and 
that I wouldn't find a surgeon to operate on a baby with t-13.  But when I 
reached 36 weeks they had a surgeon that wanted to meet with me.  All of 
Daylins major organs were healthy and he asked me if he could do the surgery.  
My husband believes that he wanted the experience of working with a baby with 
t-13.  Daylin was born at 38 weeks he was doing very well and the omphalacele 
was only about the size of a golf ball which is fairly small.  So the next day 
they took him to surgery and everything went fine.  
There are surgeons out there that will do the surgery!  Please don't let them 
discourage you.  I will keep you and your family in my prayers.
 Madjake00@xxxxxxx wrote:In a message dated 10/29/02 9:39:28 PM Eastern 
Standard Time, 
wendyhagen@xxxxxxxxx writes:


> The neonatalogists told us that she could no=
> 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 that
> would perform the surgery on a Trismomy 13 baby. 

Wendy,

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. 

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 affecting 
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.

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/


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www.trisomyonline.org
Families Helping Families On-line



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