[tri-med] Re: Can you help?

You know, now that I think about it, when we knew a possible diagnosis 
for Keren was T18 we were told it was most likely fatal.  We had a 
doctor who was extremely supportive, but he really only knew of cases 
where the child lived a few hours after birth.  In one way, though, we 
didn't take all that at face value because we already knew a couple 
(from our church) who had had a little T18 girl who had lived three 
years.  What a difference that made for us when Keren was born and we 
got the official diagnosis!  With all the fears, there was still hope.  
That couple were one of the first to come visit us in the NICU and got 
us linked up with SOFT and even Rainbows Down Under.  They were also 
there for us with each initial step.  I remember when Dave, the 
husband, dropped by when Keren was about two weeks old and said, "Just 
think, she's already past the 50% survival rate!"  It gave us that 
encouragement to look forward.  How many people don't have that?
Loren (wife to Kraig, mom to Keren, T18, 9 mo. and counting! :) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075



On Wednesday, July 23, 2003, at 12:15 AM, Glenn Hardy wrote:

>
>>>>>>>>>>> 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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