[tri-med] Re: trisomy 18, omphalocele

In a message dated 10/29/02 6:39:45 PM Eastern Standard Time, jobelkc@xxxxxxx 
writes:


> We are expecting the fourth girl on January 4, 2003.

First of all, congratulations!!
> 
> The pregnancy is at 29 weeks, diagnosed with an omphalocele.
> The genetic testing shows a full trisomy 18.

I am sorry to hear that your baby has full trisomy 18.  I know that a 
prenatal diagnosis like this can be so painful, but kudos to you and your 
wife for the strength to go to full term. I have been there too and it is a 
tough pregnancy, but you do get to a point of peace too.

> 
> We decided to carry the baby to term, although my wife usually has big 
> babies, and we will probably induce a week early.  The pregnancy is being 
> managed with my wife's health in mind.  On delivery, the doctors are 
> recommending "comfort care" for the baby.  Any suggestions, 
> recommendations, or words of wisdom would be appreciated.  


My daughter, Hannah, was diagnosed prenatally with trisomy 13.  Although the 
diagnosis was grim, we insisted that she be kept alive by all means until we 
could make the decision on what to do for her.  Well, she came out at full 
term (I was induced) and was breathing on her own and looked so healthy and 
is now a happy typical 2-year old.  Now she is mosaic which means that it's 
not in every cell, so that may help.  But just make sure they do everything 
they can to help your baby, according to your wishes.  Don't let them talk 
you into anything you don't want to do.  Prayers to you and your family.





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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