[tri-med] Re: heart surgery

My daughter Morghan, now 8 years old and Full T-18, had open heart surgery =
when she was 2 days short of two months old.  She had a very large VSD, ASD=
 and PDA.  Today she crawls, walks when you hold her hand, communicates and=
 is progressing everyday.  Not doing surgery, because of Tiresome, is an ex=
ample of the doctors ignorance and lack of understanding.  It is also nothi=
ng short of Murder.
If you would like Tyler to have a fair chance, our doctors here in Houston =
are always willing to evaluate and recommend surgery where it is necessary =
without regard to the "Tiresome" diagnosis.
Faye

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of pam&darrell
Sent: 09/26/2004 6:51 AM
To: Tri-Med@xxxxxxxxxxxxx
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 mi=
staken.  the word policy has begun to sound like a word that includes stati=
stics, 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 an=
d 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 g=
et 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 wo=
uld also like to know about the t 18 kids, too.  darrell and i are very ang=
ry that living, breathing human beings are being lumped into a catergory th=
at seems to be labelled "discard".  any help anyone can give would be aweso=
me.

another thing i would like is to find the canadians on the list if they wou=
ld not mind.  i want to find out how they have navigated through our health=
 care system.  quite frankly, we are baffled.=20

i know i am asking a lot from one email, but everyone on this list seems wi=
lling 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



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

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