[tri-med] Re: pneumonia/intubation/futility?

----- Original Message ----- 
From: "Katy Roberts"
>> We had a sad but
> famous case in Britain over the last few years about a
> baby called Charlotte born with T18 and had multiple
> medical issues and the doctors went to court to win
> the right to not intervene or ventilate if she should
> die. This was against the parents wishes. The doctors
> won.

Katy,
Just as a matter of accuracy, Baby Charlotte didn't have T-18, that was Luke 
Winston Jones. Charlotte was a prem baby, it was Luke Winston Jones that had 
T-18. His case ran close on the heels of Charlotte, with a similar court 
outcome. Luke however did pass because the hospital failed to implement the 
measures that the court said they should. All of the clippings from the 
newspaper for his story are on my website.

The sad reality of all these cases is that legally the doctors do not have 
to treat if they do not want to. In some ways it makes sense - otherwise for 
example a perfectly healthy person could demand that a doctor remove a 
perfectly healthy limb simply because they wanted it removed. But it doesn't 
make sense for our kids. It is so frustrating - I have just spent months 
helping a family here in Australia with the same issue, and the bottom line 
is that while we can threaten legal action the reality is that it probably 
would not be effective because of the way the law stands at the present 
point in time. In all of our respective countries it is the medical 
profession that determine quality of life and what it is - not us as 
parents. Our best hope here in Australia has been to find doctors willing to 
operate / treat - and its not always easy because even when we do they (the 
hospitals / system) then retaliate and sanction the doctors.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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