[tri-med] Re: hesitancy to treat



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>>>>>>>We have a letter to our doctors that is from... a place that you
expect
would carry some weight, it says:

"It is important to recognize the significant difference between classical
trisomy 13 (Patau syndrome) and mosaic trisomy 13. The former has a uniform
and severe clinical course, which leads to very early infantile demise. Once
the diagnosis is established, babies with Patau syndrome are therefore not
usually candidates for invasive procedures or heroic medical
interventions.>>>>>>>




Not that this is new to anyone or that anyone needs a
speech..........BUT.......

A friend of mine ( a really close friend) who happens to work at the
Hospital for Sick Children in Toronto as an Rn , which is a world renowned
hospital was so surprised when I told her that I Felt that Rebecca was
treated differently at HSC ( the hospital in question) then a normal
child......she as a learned and informed person was horrified at the
nurmerous small ways Rebecca was made to be less a person, she in her
experience as a medical nurse in a childrens hospital had not really
realized how we are treated, as being different. Since I am an Rn I can
stick up for my child, but my woe is for the families that can't or don't.
decisions I make for or against treatment are in my case fully
informed.........but for the general public they believe what the doc's tell
them.......


Susan mom to Rebecca trisomy 18 moasaic 10 years old!!!! and Mark LD/ADD age
9 wife to Glenn.
Newcastle Ontario Canada
hardyboys@xxxxxxxxx



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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