[tri-med] Re: Full Trisomy 17

----- Original Message ----- 
From: "Lace4Blitz" <Lace4Blitz@xxxxxxxxxxx>
my baby has full
> Trisomy 17. I am currently 29 weeks pregnant. There has never been a
> reported live birth of a baby with a full Trisomy 17. In fact doctors are
> baffled by the fact that I am still pregnant as no full T-17 pregnacy has
> ever lasted past 16 weeks gestation.

That's because the drs don't know everything and no 2 situations are 
identical. They're working with little knowledge of what happens with the 
rare/rare trisomies AND there's little literature/study done to back it up.
Thanks to TRIS there is a group now gathering rare trisomy info to get a 
data base which will help drs, and more importantly triers and their 
families have access to more accurate and up-to-date info.  (anybody who's 
not filled out a survey, this is why it's important to do so).

Many of the families here with triers who live short live or who are still 
living got the same 'incompatible with life' spiel. But obviously that's not 
what happens 100% of the time.
Yes, our children are the exception and not the rule but they ARE here and 
they DO exist.  :0)

Keep researching and asking questions. Don't get too hung up on your trisomy 
'number' because many of the rare trisomies (13, 19, 14, 9, etc) have quite 
a few similarities in terms of issues.
So take it issue by issue (such as the cardiology) and go for that info.

The trisomy isn't a disease. It's the condition that causes the 
disease/malfunctions of all the other body parts.
Hope that makes sense!

Keep asking questions and looking for answers.
Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (17)
MichiganUSA 

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

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