[tri-med] Re: trisomy 18 suspected


----- Original Message -----
From: "Heather Morgan" <hrmorgan1@xxxxxxxxxx>
>, but we have found out in bits and pieces over the last four weeks that
the >baby I'm carrying at the moment probably has trisomy 18.

Hi and welcome to the list Heather. ( I really liked the name Heather when I
was preg for our daughter but Heather Waite had to many "fun making" boxing
issues attatched to it! lol).

> So I guess with so many symptoms there's not much in terms of the
>question of WHAT is wrong.

Remember that they can't really tell just WHAT the severity of each issue
truly is until birth. Additionally, some babies have been born without a
particular issue they "saw" during testing.
Expect the best but plan for the worst.

> The bigger question for us is just what this will mean for us as a family.

Since every family is different there is no "answer" to this question.

>We have been told that most of these children don't make it very long, but
>by the listserv discussions there are also obviously some real fighters.

Yes there are but these special children are the exception rather than the
rule. However, there is always room for more exceptions around here!

> I think mostly I'm just trying to find out as much information as I can.
We have a daughter who is 19 months now (the baby is due in August) and I
want to be prepared because I know whatever happens this is going to be VERY
HARD!!!  Any suggestions people can offer would be extremely >valuable.

Knowledge is power!!!!!!! Since I didn't have a prenatal dx with Alex I
haven't been in the same boat as you. Many on the list have been. I'm sure
they'll pipe up about finding the "right" dr for you, thoughts for pulling
together your birth plan etc.  Just remember, there are no "right" ways to
do things, only the right way for you and your family! So stick up for what
YOU all want and it will be the correct thing to do.

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


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

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