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Down Syndrome NSW
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Friday, 12 December 2008

Response to calls for a national prenatal screening strategy

Calls for an Australian national strategy for prenatal testing for Down syndrome reported in last Sunday's Fairfax newspapers in Sydney and Melbourne (see this post) have generated a good deal of comment. Most of it is about the need for counselling and information for parents contemplating or involved in prenatal screening and diagnosis. We anticipate some of that response will be published this weekend, including ours.

Angela Blakston, a Melbourne Age journalist currently on maternity leave following the birth of her son Gabriel, who has Down syndrome, today makes the case eloquently for both providing adequate information (a responsibility that is taken up by Down syndrome organisations world-wide, and increasingly by the professionals involved in prenatal testing - but we have some way to go yet) and follow-up. Gabriel's parents knew that he would Down syndrome before he was born. Angela confronts the difficulty of the issues that arise, the opposing interests involved, and the paradoxes of our own community's responses to recent events:

....... I feel saddened that, on one hand, we could see the unfairness and prejudice of the Moellers' situation. On the other, we send a message through the push for uniform, national screening that the life of a person with Down syndrome is, essentially, not worth living.

I know it's on this point that many people will disagree. It's all about informed choice and the right of a woman to be given the opportunity to decide whether to proceed with such a pregnancy, right?

Well, yes, that's true, in a sense. And this is where I want to stay clear of difficult territory. I can't say what's right or wrong for another woman. Or stand in judgement. But I can say that whatever "choice" a woman makes, either way, is rarely simple or easy.

She closes with a view that will resonate with other parents around the world:

These days my biggest encouragement, however, is Gabriel. And here's something all the scanning and technology in the world couldn't tell me: just how much I would love my boy for who he is, extra chromosome and all, and how truly wonderful he is. That love, as corny as it sounds, can conquer all.

This beautifully written and well-considered article deserves the widest audience - please read it in full, and share it around.

Knowing Gabriel, by Angela Blakston, The Age, Melbourne, Friday 12th December, 2008:

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