[tri-med] Re: the truth disappears, quickly

 
When dr's look at Jason and hear about his T17, they all say the same thing  
" we have never seen a T17 baby", and a lot of them did not think it existed 
and  have never heard of it. So it is definitely possible there is just no  
protocol defined for other rare chromosomal syndromes like T17 in canada or  
anywhere. how would there be, when there is always a wait and see approach.  
"we 
have no idea what he will be like". 
 
But the more "popular" "well- known" syndromes like  T18 and T13 do  come 
with statistics and history and so the drs have been trained  somewhat with 
some 
type of protocol. totally makes sense. unfortunate, but  this is why the 
health care system universally needs to be changed.
 
Sharon
 
==============================================================================
 
 
 
In a message dated 2/15/2008 9:45:49 P.M. Eastern Standard Time,  
b_farlow@xxxxxxxxxxx writes:
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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