[tri-med] Re: hesitancy to treat

Jude wrote:

...this brought back the horrible memories of the first time kam was in
crisis.


(((Jude)))

We have a letter to our doctors that is from... a place that you expect
would carry some weight, it says:

"It is important to recognize the significant difference between classical
trisomy 13 (Patau syndrome) and mosaic trisomy 13. The former has a uniform
and severe clinical course, which leads to very early infantile demise. Once
the diagnosis is established, babies with Patau syndrome are therefore not
usually candidates for invasive procedures or heroic medical interventions.

The clinical spectrum of mosaic Trisomy 13, on the other hand, is very broad
and ranges from severe intelllectual deficits and malformations to normal
intelligence and mild dysmorphism. Any limitations to medical intervention
from an ethical standpoint would have to be assessed on an individual
basis - the diagnosis itself would not significantly guide the ethical
considerations. Rebecca is moderately affected with her developmental delays
and congenital abnormalities. This being said, Rebecca's clinical problems
are less severe than those seen in many patients with, for example, cerebral
palsy or Down syndrome. In patients with Down syndrome, the underlying
diagnosis is not seen as relevant in making decisions about medical
interventions, but rather the risks and benefits of the considered
procedure. For example, the diagnosis of Down syndrome does not preclude the
treatment of a hematological malignancy or repair of an atrioventricular
septal defect. We feel that this paradigm extends to Rebecca's case, and
that her medical issues should be as fully and aggressively investigated and
treated as any other individual who does not have a chromosomal
abnormality."

The thing is that most doctors that we have come across react more like
'this is moderately affected' and behave as if they can't think of any
benefit of any procedure or of her existence for that matter... of course
there were also several who didn't even bother to read the letter. Now as I
reread this letter I get the feeling that if you don't walk, have the
ability to sight read a few dozen words and are not verbal then you're out
of luck?

Catherine, mom of Becky 26 (Trisomy 13 Mosaic)



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

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