[tri-med] Re: heart surgery - NANCI

----- Original Message ----- 
From: "pam&darrell"
>>it is their policy not to perform heart surgery on children with trisomy.

Hi Pam,
I am not in Canada but we have the same situation here. In fact Alex's first 
cardiologist told me point blank "we have never done heart surgery on a 
child with T-18 in this country and I am not about to set a precedent"

Alex did however get his surgery - not that he had a heart problem but he 
needed the pacemaker and he got it. What I did in the end was phone 
cardio-thoracic surgeons - NOT the cardiologists. Its not the cardiologist 
that will perform the surgery its the surgeon - the cardiologist only 
recommends it.

Being a small country I didnt have to go through many before I found Graham 
Nunn. Graham had studied in the UK and HAD done heart surgery on T-18'ers 
before over there. Consequently he was prepared to do the surgery for Alex 
and even went so far as to perform the surgery so that Alex would get the 
most mileage out of it - that is he did it expecting him to live well into 
adulthood.

Another avenue worth pursuing is to contact your local "Right to Life" 
chapter. You will find them somewhere in Canada. Speak to them and ask them 
if they know of any sympathetic cardiologists / surgeons. Most sympathetic 
doctors will make themselves known to these people. I will also ask Alex's 
pediatrician - he worked in Canada for many years and still lectures over 
there every year for another group of kids who used to be denied cardiac 
surgery (CHARGE Association). He may know someone still.

If you really want to dig your heels in try also talking to your child 
protection people and or your health care complaints people. Takes longer to 
go that route here but it does work.

And if all else fails - as it did for us in trying to find a respiratory 
person who was willing to think and act outside the box the answer is 
publicity - BIG publicity. Its actually easier than you think. I started 
small and it snowballed, the end result was that I got Alex to the US to see 
the doctors he needed to see over there.

I can go through the best way of doing this, and before you start you need 
to already know a surgeon and an approximate cost. Thats why I flagged this 
for Nanci. Texas Children's Hospital have done this before for folk. Nanci 
knows a doctor that will look at Tyler's echo and other test results and 
then give you an opinion on what surgery, when and the approximate cost. If 
you want to tread softly you write to your local paper - just a letter to 
the editor - telling them that you are fundraising to get Tyler the surgery. 
Their story folk will pick up on it and one of two things will happen - you 
will get someone to pick up the fundraising (in our case it was Rotary) or 
the doctors in Toronto will capitulate and do the surgery themselves.

You could also pursue legal action - but I dont recommend that. Threaten and 
you are unlikely to get what you and Tyler need. But if all else fails it is 
possible.

Hope some of those ideas help - and if all else fails Alex's cardiologist 
would quite happily look over Tyler's records for you as would the surgeon 
and give you an opinion - unbiased opinion. I was even mean to Alex's 
surgeon and asked him what he would do if Alex was his child - and he 
actually answered (most doctors wont). He said if Alex was his child he 
would do it because Alex was a child of love.......

Love many, hate few, learn to paddle your own canoe.
  -- American Proverb

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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