[tri-wings] Re: Barb

I read the whole thing, and the original Mencap report as well. I know it is 
shocking to so many to read these types of things, but it is the reality that 
families with children with T13 and T18 face every day, as well as those who 
are pregnant with a child with either. 
Sometimes I think that the fact that my daughter's life was considered so 
unvaluable to all the health care practitioners we worked with, at two major 
children's hospitals, was harder than her actual diagnosis. I accepted her for 
who she was and it did not matter what she could or could not do, she was my 
daughter no matter what. Of course I would never have chosen for her to have 
T18, but we do not get to choose that. She had it, and that was that. 

I had a lot of medical knowledge at the time of her birth and death, being a 
Licensed Midwife, but now in school to be a Physician Assistant, I have learned 
so much more. I now know how severely they mistreated her, medically and 
ethically and the exact waiting game they played with us, until things got so 
bad there was nothing left to do. It is shameful and awful that it happens 
every day, in every part of the world. 

Losing a child, as we all know is the hardest thing to bear, losing a child 
that?others do not?value is even worse. That is why it is so nice to "be" here 
with all of you, that understand that though our children were not perfect, we 
loved them and made the decisions we made based on that love and what we truly 
felt was best for them. 

Bess


-----Original Message-----
From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
To: tri-wings@xxxxxxxxxxxxx
Sent: Tue, 12 Aug 2008 3:40 pm
Subject: [tri-wings] Re: Barb



Here is the article that provides a url to the recent inquiry that was done in 
the UK.
http://icad.wordpress.com/2008/08/05/death-in-care-of-the-national-health-service/

Barb



> From: demipowell@xxxxxxxxxxx
> To: tri-wings@xxxxxxxxxxxxx
> Subject: [tri-wings] Barb
> Date: Tue, 12 Aug 2008 19:20:57 +0000
> 
> Barb
>  
> I'm interested!  
>  
> Interestingly I know quite a few children in the UK who have had good care, 
including surgical treatment and resus.  But I'm not sure what the overall 
picture is.  And I'm pretty sure most hospitals still push termination/DNRs at 
birth.Demi > A private inquiry on the medical treatment provided for people 
with 
developmental disabilities in the UK just came out. If you are interested, I 
will send you the link.> > Barb
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                       www.trisomyonline.org
                  Families Helping Families On-line

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