[tri-med] Re: Prenatal Diagnosis

Karen, I sat back and thought a lot about your post.  In our situation, John
and I are both information seekers.   Like Ruth, we wanted to know if there
were any problems as soon as possible so we could gather information and do
what was best for our baby.  We never really discussed it, it's just who we
are.  The hard part I think is in getting people educated before pregnancy.
Someone suggested educating women in for their annual exams.  That would
likely hit women in their childbearing years.  Yet, even on this list, how
often does someone write how she hasn't had an exam in years?  And, although
I am a faithful annual gyne visitor, I'm not sure I would have given a
pamphlet on the various genetic disorders much study if I had been given one
every time I went in.  Also, we have seen on this list just how many flavors
and varieties of genetic abnormalities can be present.  Karen, your Genetics
101 does an excellent job explaining, but I had to read it several times and
very slowly to totally grasp it, and I have a graduate degree.  It's not
because you did a poor job...it's just not easy to explain.

I do think an advantageous time to hand out something like your Genetics 101
would be when prenatal testing is done.  It needs to be much more complete
than what I was told.  "The tests will check for a variety of genetic
abnormalities."  That vagueness in itself implies that there really is
nothing to worry about.

I remember when I heard Anna's T-18 diagnosis on the phone (yes, on the
phone) from my ob.  First, he said there was a finding from the amnio.  I
said, okay, my baby has Down's.  When I think back to why I said that, I
guess it's because it's the most common genetic disorder and the only one I
was even aware of.  He replied, "No, it's something worse."  When he went on
to explain T-18, I had to make him go back and spell it for me.  I had
absolutely no clue what a Trisomy was, didn't realize that Down's Syndrome
was a Trisomy.  I was totally unprepared for the fact that we were testing
for anything other than Down's Syndrome.  All I can say is Thank God for the
Internet, as it was our best source of information other than the SOFT
books.

So, I guess in answer to your question, yes, I feel people need more
education.  Ideally, it should be before pregnancy, but realistically, I
don't think it would get the attention it deserves until after the fact.  A
better job needs to be done in explaining prenatal testing, what doctors
look for and what the potential risks are.  I'm definitely all in favor of
much better education of our ob's and geneticists in handling the bad news
issue and they most definitely need to have more information readily
available on the rare genetic disorders.  In this day and age of the
Internet, it really is criminal that they are not better prepared, even for
the rare trisomies.  Do you oldies remember what I was told about the list
by our geneticist?  "You can't really rely on information you get from the
Internet.  It's biased.  The people in these groups have their own agenda."
Like he didn't???

Guess I wasn't much help.  It's just your post sent me down memory lane.
Actually, as I am writing this, I realized that it was 8 years ago this time
that we were going through the amnio and the waiting game for results.  We
got the results in early April.  Eight years have passed since I first "met"
so many of you.  My, how time flies when you're having fun!  Thanks for all
of it, everyone, the laughter, the fears, the joy and the grief.

Take care.
Ceci, mom to angel Anna, T-18

----Original Message----
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?


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

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