[tri-med] Re: Can you help?

I agree that the images on the website (and on others out there) are
very disturbing, especially when you receive a prenatal diagnosis.  But
I think the problem lies not in the website, but in the information
given to us by our doctors upon diagnosis.  When my daughter was
diagnosed with full T18 at 6 weeks old, my doctor gave me some horrible
pictures from a medical journal showing autopsy photos and stillborns.
I think that if my doctor showed me pictures of not only the babies who
had died, but also some of long term survivors, I would have been much
better informed and although the situation would still have been grim, I
would have had a little bit of hope instead of grief and destitution.  I
guess what I am getting at is, our pediatricians and obstetricians
should be better informed of the "real" statistics of our kids'
syndromes and be able to give us non-biased information, instead of
sending us home to find things on the internet.

Jennifer - mom to Elanor, 2 1/2 yrs--full T18 & Arwen 5 1/2 yrs old.


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Bernard Kingori
Sent: Monday, July 21, 2003 1:30 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Can you help?



madjake00@xxxxxxxxxxx wrote:
> 
> I wanted to know everyone's feeling on this and your opinion as well.
> 
> When I found out about Hannah's diagnosis, one of the first things I
did was
> to go on the internet, like many parents do, and the very first
website that I
> came across was this one...
> 
> http://medgen.genetics.utah.edu/photographs/pages/trisomy_13.htm
> 

I remember my heart stopped beating when I browsed this page afew hours
after
we were told that our daughter Sarah was diagnosed with T-13. However
this was one
of the few pages we could get some information .....
 
> If you agree with me, I would appreciate you sending an email
requesting that
> they remove this link.  I don't mind if they keep the page up, just
don't put
> a link to that particular page on the search engines.

Well this could be denying facts which are out there. The picture of
these infants
could be disturbing to any parent but they are our t-13 kids and won't
change the
facts by removing them. Everyone who is looking for information should
get what's is
available ~ not more not less. If we start the sort of selection I
wonder where the
world would be leading us to. Infact I would say to some extent the
picture of
these kids have taken this world a milestone ahead, whether they
survived or not
I am sure they were loved as human beings and not seen as monsters.

I hope this didn't offend or made someone feel guilty, all what I want
to say is
that if we were to start selecting, then the next step perhaps will be
don't show 
our kids to the rest of world because of that or this type of
abnormality......
.... who is there to judge? Let's our kids have that unconditional love
we all
desire to have irrespective of the diagnosis or physical looks.


Bernard ( Father to Sarah ~ 4 yrs old Full T-13)
                  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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