[tri-med] Re: Prenatal Diagnosis

This is a thought provoking subject. My prenatal screening was all  fine, I 
even went private for nucal fold and dual blood test for Downs  and not because 
of terminating but to be prepared, thats just how my  brain works. 
  My sons movement got less in the 26th week, everyone told me (this was  my 
1st child) 'oh this is normal, they are having a growth spurt', but  something 
told me there was something wrong. I went in with my mum just  for a check up 
and within an hour my son was born via emergency  caesarian. He was genetically 
tested in his 2nd week only because his  hands were tightly clenched and his 
fingers were slightly bent. Doctors  thought maybe T18, but were doubtful if 
anything was wrong. A week  later the results came back and my son is T8 
mosaic. The information  the doctors gave us from the genetisists was terrible, 
all from medical  journals with huge long endless lists of symptoms and 
negativities.
  My son spent 6 months in NICU and fought every step of the way. My  husband 
and I fought the doctors every step of the way as they were  very negative 
about what they new very little about. 
  At the end of the day my son proved them all wrong and is now 19 months  old, 
still very small and a few other problems with sight and tone and  skeleton but 
has a wicked sense of humor and wraps everyone who meets  him around his finger.
  Would I have wanted to know prenatally? The answer would still be yes,  I am 
a believer in 'forwarned is forarmed'. Even though the info they  gave us on 
his diagnosis was terrifying. But I do think there should be  trained people 
(as the genetisist is no help with my son and just wants  to be kept upto date 
with his health like an animal in the zoo) who  specialise in the rare 
syndromes, maybe even parents of like children  who can pass on some of the 
positivies as well as the negativities.
  
  Katy. mum to son with T8 mosaic.
Debbie <debbwebb@xxxxxxxxx> wrote:  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  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" 
> 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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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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