[tri-med] Re: Prenatal Diagnosis

I know I don't respond to a whole lot lately, but felt drawn to this
discussion (and boy, what a tough one!) please accept my humble opinion...

I also took for granted my first three pregnancies. With Matthew, though I
chose not to terminate, my personal preference was to know what's going on
with the pregnancy/baby so that I could prepare for the birth and what's to
come (which is why I had the amnio done after the AFP came back with high
risk and the ultrasound showed multiple anomalies). Having had a baby since
Matthew and being pregnant now once again brought/brings all these
feelings/questioning back into play once again. With early screenings and
AFP's offered to women my age it would appear that our age group would be
more made aware of potential issues and prompt us to educate ourselves. With
that said, my decision to continue the pregnancy with Matthew was met with
surprise on the part of doctors and geneticists. 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!

Ruth, wife to Rudy, mom to Brendon (20), Scott (18), Joshua (14), Matthew
Rudy
(full T18, born 09/13/01, Rudy Matthew (born 08/13/04)...and new little
peanut due 08/23/06.
http://members.cox.net/t18mom

Character cannot be developed in ease and quiet. Only through experience of
trial and suffering can the soul be strengthened, ambition inspired, and
success achieved. ~Helen Keller

> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Karen
> Sent: Wednesday, March 29, 2006 11:27 AM
> To: Tri-Med; Tri-Wings
> Subject: [tri-med] Prenatal Diagnosis
>
>
> I was talking to a doctor here in Australia yesterday. This
> particular doctor specialises in prenatal diagnosis and is very
> concerned that there isn't enough information "out there"
> regarding prenatal testing for parents or that when prenatal
> testing is done and reveals possible issues parents are not aware
> of what it means and so are overwhelmed at a time when "hormones"
> are not exactly stable (his words, but I do agree).
> He has already rocked the boat here in Australia by authoring and
> publishing a book that promotes the fact that all these choices
> are the parents and that their feelings should be considered
> first. For example in his book he has a piece from an Australian
> family who opted to continue their pregnancy after the prenatal
> diagnosis of T-18. I loved his book because it was simple but
> very honest and factual. The medical profession here did not like
> it.......
>
> We were discussing ways to educate parents and get the
> information "out there" - preferably before pregnancy. He gets
> the feeling that most parents just dont want to know unless a
> problem occurs. For example they go to the ultrasound wanting
> pictures and to check that everything is alright, rather than
> checking for something being wrong.
>
> I was wondering what everyone here thought. I know I was totally
> ignorant about prenatal testing when I was pregnant and that with
> my first two pregnancies I never even considered that anything
> might be wrong. How do you think we could educate folk? Do they
> need education?
>
> Life consists not in holding good cards but in playing those you
> hold well.
>                                             -- Josh Billings
>
Keep Looking For Rainbows!!
>    _--_|\
>  /Karen \
>  \ _.--._ /
>           v Karen, Mum to Alex (11 years, T-18 Mosaic)
> http://members.optushome.com.au/karens
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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

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