Nothing to Fear

Today the NHS has issued a press release. We all knew it was going to happen, the rolling out of the new non-invasive, safer test for Down’s syndrome. A simple blood test will be able to tell you if your much longed for baby will have Down’s syndrome.

For months now whenever I blog about this, I feel physically sick. I tiptoe around and try to find the right placating words. I can’t do that any more. My child is worth more than that.

I agree that this test will mean fewer invasive tests (amniocentesis) which diagnose genetic disorders such as Down’s syndrome.

I agree that as such it will reduce the risk of miscarriage.

I agree that it will give an accurate result for Down’s syndrome.

BUT

I KNOW that more babies with Down’s syndrome will be aborted.

Killed.

For the reason of an extra chromosome.

Prof Lyn Chitty, who led those trials, told the BBC:
“For those with a positive diagnosis, we have to put measures in place to support them.”

measures“….what measures?

Are they going to give the mum and her family the opportunity to discuss fairly and openly what Down’s syndrome actually means? With properly informed counsellors? Will they get the chance to meet families and people with Down’s syndrome?

Or will they be told in hushed tones….

“We’re so sorry that your baby has Down’s syndrome.”

Will they be offered abortions right the way through to 40 weeks?
YES it DOES happen this way…that’s why I get so upset. It’s not fair on these babies and it’s not fair on their families either. It’s not fair to stigmatise or pressurise. Down’s syndrome is nothing to fear.

My baby girl (well not so much of a baby anymore) has Down’s syndrome.

We found out the day after she was born.

I KNOW that if I had been told when I was pregnant, I would have in all likelihood have aborted my beautiful child.

I have to live with that knowledge. I hang my head in shame.

I would have been wrong.

But I would have justified my actions.

I would have thought that I couldn’t do it;
couldn’t bring up a child with additional needs;
couldn’t see her life as being worthwhile;
would have imagined a life of hospitals and special schools;
wouldn’t have been able to fit in with my life.

I’m not saying any of this to be contentious. I’m saying it because to my eternal shame, it’s true.

I know that my family in finding out a prenatal diagnosis of Down’s syndrome would have held the same fears as I. And would have supported any decision I made to abort.

How do I know this?

Because they like me had the same preconceived ideas of what Down’s syndrome is.

And WE WERE WRONG.

Believe me reading a leaflet does not give you a true and accurate picture of what Down’s syndrome is.

Why is that?
Why can’t these leaflets explain?
It’s rather obvious…people with Down’s syndrome aren’t Down’s syndrome. They are real live, actual people. They are their families. They are flesh and blood, emotions and heart, intellect and love.

Why do we hate Down’s syndrome so much as a society?
Why do we fear it?

Is it because we can see the traits of Down’s syndrome?
Yes, there are similarities that the extra chromosome presents in people with Down’s syndrome.
So what?

Evie looks like me. There’s no question of her parentage.

What do we target next? Autism? Cerebral palsy? Turners syndrome?

Let me make it clear…Evie does not suffer from Down’s syndrome. Never has, never will.

The only thing she suffers is society’s judgement of her extra chromosome.

 

Down’s syndrome – nothing to fear.

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6 thoughts on “Nothing to Fear

  1. I can’t believe the figures of how many babies die due to the invasive tests. The amount of people who are willing to put their fetus at risk to see whether they have down’s syndrome. We are raising generations of people who have never met a person with down’s syndrome. I am proud to say we have three children with down’s syndrome living within a mile from us.

    Down’s Syndrome is nothing to fear. I do think for trisomy 13 and 18 babies it’s a little different and am more in support of terminations for these babies if that’s the parents’ wish, however I think INFORMED decision making is so important. Many trisomy 13 and 18 parents do go ahead with their pregnancies.

    I didn’t have any of the tests when I was pregnant, as I didn’t want amnioscentisis etc and was quite prepared to love and care for my baby whatever the outcome.

    Liked by 2 people

    1. We have 10 living in a couple of miles.
      Perhaps we should call it trisomy 21, get away from the emotive “d” word. It is just another syndromesfter all , then society may start to see it as that. Not as the most researched and therefore to be eradicated condition. Being outrageous , the complications from saving very prem babies alive can be huge, as we see when we go to disability events – those babies are loved just as much as ours with DS. So why do more tests for DS????

      Like

  2. Unfortunately, Turner’s is already targeted, as you can see after reading a few posts on the Babycenter termination for medical reasons board. 😦 I normally can’t stomach looking at it, but I do when I need to add fuel to my fires (it’s good inspiration for posts like yours above)

    Like

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