[tri-med] Trisomy 18 do not live

Here's one for you.  In my nursing book it says that trisomy 13's "most of
these children do not survive past early childhood."  I'll accept that
statement without comment.  However it goes on to say about trisomys 18's
"these children do not survive beyond early infancy."  That's a pretty all
inclusive statement.  So, went on the net and printed a few of your stories
off, took all my booklets (soft, unique, CDO, ect,) the welcome to Holland
poem and educated my class of 20 people and the teacher (offering the
possibility of touching many!).  I also told them that a medical term they
should take out of their vocab is "incompatible with life."  I said I didn't
hear it b/c we had a late diagnosis.  However, I will GARUNTEE you that if
you say that to someone they will hear those words and see YOUR face forever
whether that child lives or dies.  Perhaps I made a difference so if they
come across anyone they will be better.  I think they will just because they
have all met Marissa but who knows.

The book is Maternal & Child Health Nursing; care of the childbearing &
childrearing family
Third edition by Adele Pillitteri
Put out by Lippincott
It is page 1105

I went to the lippincott website and this looks like the best place to send
something:
http://lww.custhelp.com/cgi-bin/lww.cfg/php/enduser/ask.php?p_sid=7MUCZS8g&p
_lva=&p_sp=&p_li=
How about you T-18 ers bombard them with your stories so they will change
the book.  This might not be the place to do it, buy it's a start to stop
the mis-education!
There is even a place to attach a file so you could even send them a pic of
your child!!

April, Wife to Kenny, Mom to Marissa, 3 years old,  PT3 PM10
http://marissakayroles.homestead.com/Marissahome.html
IN, USA

Come to the edge, he said.
I said, I can't, I might fall.
Come to the edge, he said.
I said, I can't, I am afraid.
Come to the edge, he said.
I came, he pushed me. And I flew

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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