[tri-med] Re: Trisomy 18 do not live

Dear April:

I commend your efforts in trying to educate, enlighten and provoke
the myopic masses into real life education in dealing with the
medical community and special needs children.

Whilst I applaud your effort, I have some questions.  First off,
how OLD is the "nursing book" that you refer to in your email?
What's the date of publication?

Secondly, you can print off all kinds of stories, give hundreds
of ancedotal information to these people, but will they learn
from it and believe it?

Yes, I will forever remember those words my Obstretrician,
Dr. Winifred Soufi said to me over the phone that my daughter
Kashmir "was not compatible with life".  I guess she's kicking
herself about now that Kashmir is 4 years old and doing well.
(I doubt it).   She probably doesn't even remember Kashmir and
could give a hoot as she's gone on to grow her Obstretical
business into one of profit.

I don't mean to rain on your parade, but in my experience,
I have tried to educate hundreds of medical professionals
as to the research necessary for them to understand
the variations of chromosomal abnormailities.  My understanding
of the situation is that most doctors (and ANY DOCTOR MONITORING
THIS LIST CAN PROVE ME WRONG) study human genetics
for less than one entire SEMESTER of their 6-year degree
program.  I think they spend more time on how to treat
hemorrhoids than they do understanding the human genome
factor.  This is the "NO SPIN ZONE" and if you don't like the
message, do not attempt to silence this messenger.

I am not intimidated or manipulated by anyone and will continue
my quest, as you do, April in trying to educate those less
fortunate in their knowledge.

--Linda Adams
Mom to Jake, 10 yrs old,
Kashmir, Full Trisomy18, 4 yrs old
Evian Chanel, 3 yrs old
wife to Brian, 14 years



April wrote:

> 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


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

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