[tri-med] Re: Prenatal Diagnosis

this reminds me that the 3 books my geneticist (sp?) gave me were all about 
how to do an early delivery (terminate) ceremony and have memories.  i know 
everyone has to do what is best for them but i can remember going out to the 
beach and just balling like crazy.  no one ever gave me any info about 
surviving children.
the soft pamphlet was so copied over it was about unreadable.  when i called 
barb and asked to talk to parents of living and angel chilren all she gave 
me was angels.  i still dont quite get that.  i know barb has never had a 
prego parent call me to ask about living children???maybe soft is a bit 
biased about the info it gives out to expectant parents too.!
it seems the internet might be the only trulet open outlet for info. 
knowledge is power and parents need to know all aspects in my opinion.
jude, mom to derek-19, kelsey-17
and kameron-8-full t18
golden, colorado usa
http://www.judewolpert.com
http://home.comcast.net/~jfwolpert2
http://judewolpert.com/v-web/b2/
----- Original Message ----- 
From: "Ruth" <t18mom@xxxxxxx>
I mention this because I
> don't believe that a whole range of educational material was presented to 
> me
> as far a survival stories of children with Trisomy 18. Aside from the
> initial meeting with the geneticist before the ultrasound/amnio, I simply
> was handed a booklet about T18 and given statistics and a number for 
> support
> groups. I have spoke to many that have had different opinions than myself
> but it still seems that no matter what, more education could never hurt. I
> realize that I am speaking of education after becoming pregnant here, but
> maybe getting more survival information to these geneticists would make 
> some
> sense.
>
> Regarding education before pregnancy: Though it didn't apply to us
> personally, I, for one, had no idea (until I joined the list) that there 
> are
> translocations and the such...lack of education? Yes. How to educate? Hard
> to answer. Had I picked up a pamphlet of some type that addressed the
> possibility of this, I would have questioned the situation and possibly
> requested testing and additional material before even trying. How to
> implement these things without scaring the bejeebies out of parents has 
> got
> to be a tough one. I might suggest a short pamphlet with a link to a 
> website
> that can educate extensively  available at doctor's offices for couples
> trying to conceive or women going to their yearly exams? Gee...sounds 
> easier
> said than done.
>
> I will be interested in the input of others!


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

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