[tri-med] Re: Prenatal Diagnosis

Oh my Jude, I must agree here.
That was the first time I'd read about how terminations happened.
It was awful... but it was the only books I got from anyone before
delivering Claire.  We were fortunate to find Kamie and Faren and
their parents were terrific at responding to all our questions!  Sad
about those books... frightening too.

The infor we got from our NICU dr did include some T18 'problems' and
that was horrible too.  Our Claire was born beautiful (we are blessed)
and we sure don't see those other things.  It may have been better not
to see that stuff altogether.

They don't know if our kids will live, so maybe instead of scaring us,
they should all just keep their mouths shut!?     (where did that come
from?  ;o)

Debbie, mom to Claire.


On 3/29/06, Jude Wolpert <jfwolpert2@xxxxxxxxxxx> wrote:
> this reminds me that the 3 books my geneticist (sp?) gave me were all abo=
ut
> how to do an early delivery (terminate) ceremony and have memories.  i kn=
ow
> 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 cal=
led
> barb and asked to talk to parents of living and angel chilren all she gav=
e
> 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 simp=
ly
> > 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 myse=
lf
> > 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, b=
ut
> > 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 ther=
e
> > are
> > translocations and the such...lack of education? Yes. How to educate? H=
ard
> > 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
>
>


--
Sleep is for Pansies.

Faith sees the invisible, believes the incredible and receives the impossib=
le!
If you want the rainbow, you gotta put up with the rain.
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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