[tri-med] the truth disappears, quickly

Dear Friends,
Well, that certainly didn't take long. I told the geneticist that I was very 
pleased to see the truth of the situation on the web-site and although I 
believed that it was wrong (and a violation of human rights as it was genetic 
discrimination) that it was still better to tell the truth than have a lie.

If we had known that Annie would only be provided with supportive care, then we 
would have managed her health in a different way. I think that we would have 
just taken her home and hoped for the best.

Today, the definition has vanished, but I managed to find the cached version. I 
am pleased to provide it privately to anyone who is interested.

Irene, you asked about a child with a very rare chromosomal diagnosis who was 
being provided with excellent care in Canada. 

I have a few guesses as to why that might be. 

First, Annie relieved excellent supportive care. Her hypoglycemia was extremely 
well managed by everyone. They were really pushing for a g-tube so that was a 
surgery that was offered. But when her "natural" life was threatened by 
skyrocketing CO2 levels, they did not investigate the cause. The told us her 
trachea was fine and it was not until after she died that we learned of the 
critical CO2 and Bicarbs. 

Another possibility is that the rare chromosomal disorders may not have 
statistics. Trisomy 13 and 18 = lethal. It is that simple. For doctors who are 
supposed to be so smart, for some reason they can't look beyond that. 

It is a mystery to me why this description was added and an equal mystery why 
it was suddenly removed when I found it and congratulated them for telling the 
truth. 

Barb

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

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