[tri-med] Re: heart surgery

Hi Pam and Darrell,

Tell me who to send the email to and I will describe Ruth to 
them.  She has a hole in her heart and a divet in a ventricle, but 
both are small enough to not require surgery.  She is full t-13.  
Her life is definitely worth living!  
I am so sorry that the health care system is so challenging for 
you.  I grumble and complain about ours, but it sounds like you 
have the short end of the stick in this situation.

Rebecca, mom to Kashi (18) and Ruth (full t-13, 3/25/04), stepmom 
to Josh (33)



---------- Original Message ----------------------------------
From: "pam&darrell" <bifman@xxxxxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
Date:  Sun, 26 Sep 2004 07:51:15 -0400

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

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