[tri-med] Re: Can you help?

        Susan, that is exactly how I feel!  I know that if had been able
to contact a mom or dad with an older child w/ T18, I would have looked
at them as not an exception, but hope!  I understand that doctors have
to give the worst case scenario and all, but they also need to recognize
that if the child survives the parents need to know what they might
expect and how to give their child the best possible life they can have,
however long or short.  I also think that they think parents shouldn't
have to go through caring for a handicapped or terminal child if they
have an "easy out" in the beginning.  I don't know about anyone else,
but if Elanor was fighting, I was going to do anything to fight for her!

Jennifer, mom to Elanor-2 1/2, full T18; and Arwen-5 1/2
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Glenn Hardy
Sent: Tuesday, July 22, 2003 10:15 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Can you help?


>>>>>>>>>> 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.


The thing that drives me nuts is that even when they know that there are
long term survivors they don't share it.  My Rebecca is 12 years old and
I am an Rn working in labour and delivery and the doc's know I have a
T18M child but no one asks me to talk to others.......they see her as
the exception, I have been in contact with the local genetics people I
have sent pictures,  its as if they don't want to tell people that these
kids do survive and thrive 


Susan mom to Rebecca T18m age 12

                  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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