[tri-med] heart surgery

hi everyone.
we are about to meet with cardiologists this week to discuss heart surgery for 
tyler's vsd.  he is 2 months old now.  his heart is getting worse.  in our 
area, heart surgery is done at toronto sick kids hospital.  it is their policy 
not to perform heart surgery on children with trisomy.  as this is tyler's most 
serious medical problem, we tend to believe the doctors are mistaken.  the word 
policy has begun to sound like a word that includes statistics, not human 
beings.  we want to show them why they are wrong.
i would really appreciate it if anyone who is willing would send a photo and a 
description of their child listing what they can do , how they function and do 
have quality of life. i have already "met"a few of the kids through their 
parents so i know they live worthwhile lives-doctors don't seem to get that.  i 
want them to see it. since tyler has t13 i would really like to know if any t13 
kids have had heart surgery and what the outcome is.  i would also like to know 
about the t 18 kids, too.  darrell and i are very angry that living, breathing 
human beings are being lumped into a catergory that seems to be labelled 
"discard".  any help anyone can give would be awesome.

another thing i would like is to find the canadians on the list if they would 
not mind.  i want to find out how they have navigated through our health care 
system.  quite frankly, we are baffled. 

i know i am asking a lot from one email, but everyone on this list seems 
willing to step up and help change things for special kids.

much appreciatiom,
pam, hubby darrell, tyler t13 mosiac, kira 2
elora ontario
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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