23 October 2008

What's The Point?

I've been meaning to write about the notion of Futility for a long time.

We first heard this word when we received Vera's diagnosis. It's not an oft-heard word you'd agree. Somehow, it belongs to the realm of other similarly little-said words, like Failure and Feeble.

'Futility of Care' - that's the term they use. Meaning, whatever you do is not gonna make much difference to the end result, which is death. This medical term has been inextricably linked to Trisomy 18. I believe it forms the basis for the point of view of some doctors.

"What's the point?"

Well, the point is, that surviving Trisomy 18 babies are human. They are capable of feeling joy, irritation, contentment. The point is, that progress, although very very slow is possible and a reality. And the point is, that Trisomy 18 babies come in different levels of severity. One futile case is no reason for treating all cases as such.

And for those who give their utmost to these miracle babies at home, the result of care, is far from futile.