[tri-med] Re: heart surgery

Leilani had 3 heart defects repaired (a large VSD, PDA, and double outlet
right ventricle).  She was one month old, 2 lbs, and 13 oz when the surgery
was done.  She sits unassisted, crawls, and is on the cusp of walking.  She
loves to watch cartoons and torment her little brother. She is full T18 with
a host of other medical problems, but none bigger than her desire to
survive.
See pix attached.
Gerri Alston Meggett, DM
Faculty, University of Phoenix

----- Original Message ----- 
From: "pam&darrell" <bifman@xxxxxxxxxxxx>
To: <Tri-Med@xxxxxxxxxxxxx>
Sent: Sunday, September 26, 2004 4:51 AM
Subject: [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
>


-- Binary/unsupported file stripped by Ecartis --
-- Type: image/jpeg
-- File: DSCF0062.JPG


-- Binary/unsupported file stripped by Ecartis --
-- Type: image/jpeg
-- File: DSCF0053.JPG


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

Other related posts: