[tri-med] Re: Newly diagnosed Trisomy 18



> ----- Original Message -----
> From: "Rory Bell"
> > My wife is 27 weeks pregnant with our first child.
> An intensive ultrasound
> > revealed the very real possibility that our
> daughter, Caris has trisomy
> 18.
> > The ultrasound showed that Caris has suffered a
> diaphragmatic hernia which
> > is causing her stomach to grow in the chest
> cavity.

Hi Rory,
Welcome to the list.  I'm sorry you have the need to
find us, but this is a great place for support.  My
son, Morgan, has a partial t18 and partial monosomy 9.
 He, too, had no heart problems that were seen
prenatally and he had none when he was born.  He did
have esophageal atresia w/t.e. fistula.  This means
his esophagus was not connected to his stomach.  He
had surgery to correct this when he was 10 days old. 
Our surgeon never told us what to do or questioned any
of our decisions.  In fact, he told us it was his job
to give us the options and let us decide what we
wanted him to do and then he would do it.  Morgan made
it through this surgery (which took 5 hrs.) just fine.
 As I was thinking about this I was wondering how many
kiddoes on the list had surgery as newborns?  I doubt
that Morgan is the only one.  Anyway, he will be 4
yrs. old this summer.  He is as healthy as a horse, as
the saying goes (BTW, does that tag me as
midwesterner?) I hope you are able to make some
informed decisions when the time comes regarding
Caris' care.  Please know that you are in our thoughts
right now.
 

=====

How shall we tell an angel from another guest? How, from the common worldly 
herd, one of the blest? The old Sphinx smiles so subtly: "I give no golden 
rule, -- yet I would warn thee, world:  treat well whom thou callest fool."     
            Gertrude Hall

Holly- wife to Mike, mom to Morgan Jubal (3 1/2 yrs.) partial t18q & partial 
monosomy 9p with translocation; and Gibby, the cat
Des Moines, IA USA
http://www.homestead.com/_morgansplace/page1.html


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