[tri-med] Re: medical policy on heart surgery

----- Original Message -----
From: <JMSK8RPRO@xxxxxxx>
>> The cardiologists don't want t=
> o=20
> operate on trisomy 18 children because life expectancy is so poor; we
are=20
> told they don't live beyond infancy even with a good heart.

Hi Larrie and Jackie,
As you have seen from those on the list the statement that children with
Trisomy 18 don't live beyond infancy even with a good heart is not correct.

Unfortunately your doctors thoughts on not operating are probably based on
their own feelings - that children with T-18 do not have the "quality of
life" that warrants surgery or what they consider "extreme" measures not
fact.

Heart surgery on our triers is much the same as those without trisomy, some
do well, some have problems, and some don't make it through. There are
representatives from all of those categories here on the list. I am sure
that many will speak up and I can send you names, pictures and stories for
many as well.

It sounds like you may need an advocate and also to get another opinion. How
hard you work at that depends on how you feel.

I will send you Dr. Carey's email and phone contact details off list. John
is very respected and has managed to champion for surgery for our kids many
times. Just make sure when you speak to his secretary that you let know how
urgent it is.

John has also recently completed a study into the pros and cons of cardiac
surgery on our children. This was factual information based on actual
families who volunteered to help with the study.

SOFT US may also have the names of doctors in Indianna who are willing to
operate on our kids. I know SOFT in Australia now has a list of doctors
names like this. And I am sure that if there are any Indianna families with
some names they will speak up as well.

Another avenue is to perhaps contact your local "right to life" group. They
often have the names of doctors who are willing to go that extra step.

I find it very hard to understand why doctors discriminate in this way. I
guess that is why I have been working so hard to stop this practice in
Australia. I find out in a few weeks whether it will become illegal to
discriminate against anyone on the basis of their genetic makeup - my catch
cry these days is that Trisomy 18 is a genetic PROFILE it is NOT a medical
diagnosis. No one dies from Trisomy 18, they die from the medical
complications arising from the changes in their genetic makeup.
There may well be other medical indications that make surgery inadvisable -
but that is different to Trisomy 18 (or any other genetic condition) making
it inadvisable.

I even came up against this with Alex. Alex has had a cardiologist from
birth, even though his heart is "OK". When we were advised that it would be
in Alex's best interest to have a pacemaker we approached this cardiologist
and his exact words to me were "We have never performed cardiac surgery on a
child with T-18 in this country and we aren't about to set a precedent now"

This must have been (and I have since learnt later definitely is) his own
personal feelings on this matter. What he said about the surgery never
having been done was true though. We however found another cardiologist who
referred us to a thoaric surgeon from England who WAS willing to do the
surgery. I am happy to say that other than our usual problems with morphone
it was totally uncomplicated and VERY worthwhile. They can NEVER say again
that no child with T-18 has never had heart surgery in this country :-))))

Don't judge each day by the harvest you reap, but by the seeds you plant.
Robert Louis Stevenson

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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