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Special Needs Parenting: Passing the Test

Special Needs Parenting: Passing the Test

This isn’t a scene from a novel about a dystopian future world. It is a scene from my own life, seven years ago.

OK, it’s couched in rather melodramatic terms, but the basic sentiment portrayed is one I genuinely felt at the time.

My fear was that if, at my twenty-week scan, any evidence was seen that suggested my baby had Down’s Syndrome, I would be coerced into having an abortion. It really felt like that could happen. I’d already been pressurised into having a nuchal scan that I didn’t want. When that revealed a 1-in-12 chance that my baby would have Down’s I was told that I would have to undergo an amniocentesis. I wasn’t offered any information on the condition, or any other support. I refused.

My midwife was taken aback, and assuming my decision was prompted by a fear of miscarrying a healthy baby as a result of the procedure, she said that she would arrange for my twenty-week scan to be performed by a consultant, who would conduct a thorough examination which should detect any of the ‘soft markers’ that betrayed abnormality.

Then, if any were found, it would still be possible to terminate. She just couldn’t get her head around the idea that I would want to continue the pregnancy regardless. This is why I read the news of a new non-invasive prenatal test for Down’s with very mixed feelings. While I welcome the advent of a procedure which enables those who wish to test to do so without the risk of miscarriage, I am afraid that it carries another risk.

Namely, that it will be presented as a way to weed out imperfect foetuses without any risk of harming healthy or ‘perfect’ ones. Prenatal should be about INFORMED CHOICE, not no choice at all.

But in order for that to happen parents need to be given accurate, up-to-date information from sources who are experts not just on the factual, medical information about Down’s Syndrome, but about the realities of daily life for those with an extra chromosome.

At the moment this is often not happening.

Expectant parents should not be relying on their obstetrician for information about Down’s, with respect, it’s not their specialty.

There are many sources of excellent information out there, but it doesn’t seem to be making it into the hands of the people who need it most urgently – those receiving a prenatal diagnosis.

We need to make this happen. But how?

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Real life stories, issues and experiences of day to day life by special needs parents and
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Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

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