A World Without Down’s Syndrome?

A World Without Down’s Syndrome?

Let’s address something…

I know that I harp on about many things…politics, baby loss and Down’s syndrome. I make no apologies for it. I do so because they really matter to me.

You’ll have seen me posting lots and blogging in the run up till tonight’s documentary on BBC2 at 9pm – “A World Without Down’s Syndrome?”. This documentary matters to me and my family, matters to the Down’s syndrome community but it’s much more than that.

This documentary matters to us all, it’s about the society that we live in. If you haven’t been reading my posts (shame on you) surrounds the introduction of the non invasive prenatal test, NIPT on the NHS. This test more accurately gives results for chromosomal differences (hate the word abnormalities). Including Down’s syndrome.

I have major concerns about this test. It’s not about the test itself, it’s about the way it is being used and sold to pregnant women. The NIPT will decrease the risk of miscarriage and that is a great thing.

What bothers me is that women aren’t being told that firstly the test is optional. You don’t have to have it.

It’s not diagnostic – it’s more accurate at assessing the chance (not risk) of having a child with DS and other conditions.

The issue for me personally is that women aren’t told what Down’s syndrome actually is. In the main it seems that the health professionals aren’t keyed up about disabilities. They portray Down’s syndrome as a terrible thing. It’s not. It’s really not.

They use words like “suffer”. Evie doesn’t suffer, the only thing she suffers from is society’s bad attitude and assumptions about her. Down’s syndrome isn’t a disease, she’s not contagious. She’s just a little girl with a huge appetite for living and cake and chocolate.

It goes without saying that I wouldn’t be without Evie for the world. She’s changed our lives, so many people’s lives for the better.

Down’s syndrome isn’t scary. It makes you think differently about yourself as a parent. It makes you question what type of person you want to be.

If the NIPT is rolled out across the NHS as it stands, women won’t be fully appraised with detailed and unbiased information. I’m not asking for women to be given a rose tinted view of the DS world, but I don’t want them to be told horror stories either. Balance is all that’s needed.

The NIPT has implications for society as a whole. Where do we draw the line with testing? We have great shock at the fact that some families choose to have male children rather than female through testing…why is this so different?

If we could test for IQ would we allow termination on those grounds?

There is so much that I could write about this…such a huge expansive issue.

The fact is this in Iceland where the test is taken up highly, every baby who has been detected with Down’s syndrome has been aborted. Now as sickened as I am by this, it is the mother’s right to choose but has that mother been given full and unbiased information? I doubt it.

I don’t want that to happen here. I want us to have information, balance – an informed choice. If we have information made available to mothers who can have the test, they can decide what they want to do. They need no pressure. They need support whatever they choose to do.

They need to know the facts from the fallacies.

I know that pregnant mothers are often being told by health professionals that they should have an abortion when their baby is diagnosed with Down’s syndrome. Some have been booked in for one without any consultation – it’s assumed that this is what they will do. Some are offered abortions right up to 40 weeks of pregnancy…that’s right 40 weeks. This isn’t scaremongering, this is happening right now in our hospitals.

This is why parents need information. They need our support. We need to take a good look at ourselves in the mirror and ask is what is happening now morally right?

Please watch the documentary tonight. I’d love to know your thoughts.