[tri-med] Re: trisomy 18, omphalocele


----- Original Message -----
From: <jobelkc@xxxxxxx>
>We are expecting the fourth girl on January 4, 2003.
>
> The pregnancy is at 29 weeks, diagnosed with an omphalocele.
> The genetic testing shows a full trisomy 18.

Hi and welcome to "the list"! Like everyone else, glad you found us but
sorry you had to.

I'm one of the Michelles on the list. My reason for being here is our 15 yr
old son Alex who has a diagnosis of partial trisomy 14 mosaic.

>   On delivery, the doctors are recommending "comfort care" for the baby.
Any >suggestions, recommendations, or words of wisdom would be appreciated.

I can't help you out there. We didn't have a prenatal diagnosis so upon
delivery everyone went on as if he were a typical newborn.

At birth Alex was a typical trisomy baby for the most part (they tend to be
small, problems with feeding, lethargic, floppy etc) but as he gained years
he progressed. Alex started high school this Aug (no small feat given where
he started life at). He has some educational issues but is doing fairly
well.

He's also a Boy Scout, has attained his jr black belt in Tae Bong Soo Do and
just finished up the season with the jv soccer team. Sounds like a typical
life but Alex has his issues and there's been a ton of hard work involved.
Thankfully Alex is a great kid who WANTS to achieve and is willing to do the
work. (although some times he really would like me to back off but that's
not been remotely possible since he was born--I didn't work hard to keep him
alive for nothing!) He really is a ray of sunshine and a neat human being,
esp for a teenager.  :0)

We are fortunate that Alex hasn't had much in the way of medical issues. The
biggest is prob the allergy induced asthma.

There are folks on the list who have had experience making birth plans and
I'm sure they'll give you some ideas and suggestions.
Just remember, every family/situation is different and we all have to make
decisions based on what we feel will be the best for OUR situation. So keep
that in mind, follow your heart and you'll find the path that's right for
you.

Good luck,
Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (11)
MichiganUSA


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

Other related posts: