Guest post: "I fear the eradication of Down's syndrome"

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On the day Natty was born, I wasn't sure I was up to being her mother. Ignorance took over. Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.

In eight years, we have come so far as a family, risen to challenges, endured heart surgery, made adjustments and learnt to slow our pace and live in the moment. I wouldn't change any of it. I am a better person now. The pregnant woman I was, whose heart was filled with fear at the words Down's syndrome, now shakes her head in disbelief.

I've been bleary-eyed over research for this post. And, in fact, as I rose at 5.30am, drafts of what I would write very much in my mind, there was one member of our busy household who noticed my pensiveness. Natty drew me down to her face level, looked intuitively at me and said 'It's OK Mummy.'

I held her so tight, and made a silent promise into her warm hair, a promise that I would do my best to convey her worth to the world.

Because while we praise advances in healthcare and women's control over their reproductive lives, there is an important ethical debate I fear is being overlooked.

A new non-invasive prenatal test (NIPT) could help identify women whose babies have Down's syndrome. The test involves taking a sample of blood from the mother and it uses this to detect the baby's DNA.

At the moment, the NIPT test is available privately, but it could soon be rolled out by the NHS as part of their population screening programme. The UK National Screening Committee has just ended consultation over offering it - it can only be added to the programme if there is a beneficial reason for doing so.

However, there is no health gain in diagnosing Down's syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not.

There are ethical implications to genetic testing, but no easy answers. The UNESCO International Bioethics Committee says that genetic testing can offer women the right of choice. However, it could also become routine that ill or disabled children are not to given the choice of birth at all.

So giving women choice whilst not devaluing individuals with Down's syndrome is a fine line to tread.

We must ensure that parents are given unbiased, updated information in order to make informed choices. There can be no assumption that those with Down's syndrome are not compatible with life - or worse, that they are too costly to have a right to life.

We are promised that the new NIPT can allow parents to be prepared for their baby's arrival and that it will not increase termination rates. However, in countries where Down's syndrome screening has been standard for years, termination rates stand at almost 100%. Are these tests being sold as a kind form of early euthanasia to trusting expectant parents - and will a whole genetic group of people be targeted in the process?

The support networks we have in place simply aren't as sophisticated as the genetic tests being considered. We must explain test implications and outcomes, support those who choose a termination and give equal care to those who choose to continue their pregnancies. We need charities that aren't partnered with the test manufacturers.

If parents are rushed into terminations, or asked repeatedly if they would like to end their pregnancies, then we are certainly sending out the message that some lives are worth a great deal less than others.

We need the screening committee to welcome input from parental groups and self-advocates. We need to match up the wonderful examples of best practice by bringing committed midwives and learning disability nurses together, and we need to accept the value of difference.

Society has come a long way from the days when children with Down's syndrome were institutionalised with little or no love, educational support or quality healthcare. We hope Natty will find employment she enjoys, have a partner of her choosing, a social life fuller than ours and live a long, healthy life independently with support.

I cannot bear to think that one day I will have to explain to Natty why others think her adored life is not worth living, or even justify her very existence. But here I am, already doing just that.

And, most of all, I fear that one day I will be grieving, as others celebrate the eradication of all children like my beautiful daughter. No Natty, maybe it's not OK.

The BBC is making a documentary about Down's syndrome, which Hayley Gowleniowska is contributing to. If you are affected by the tests and interested in an initial off-the-record research chat, please contact Clare at [email protected].

"circular kind of argument where prejudice/phobia justifies eradicating the people who are the subjects of the prejudice, instead of eradicating the prejudice"

What exactly are you referring to as "prejudice"?

Assuming that we are still on the topic of abortion of fetuses with Down's Syndrome, imho that decision is not based on prejudice (= preconceived opinion that is not based on facts & reason).

Learning disability means low IQ. It's a more acceptable way of saying intellectually disabled.

"Learning difficulties are the low IQ, surely."

Actually, no, they are not the same thing. People with high IQ can have learning disabilities, too.

This is the definition of learning disability cote.
www.learningdisabilities.org.uk/help-information/about-learning-disabilities/definition-learning-disability/
I think you are confusing specific learning difficulties with learning disabilities
It might be worth extending your reading matter when you are trying to purport on a subject matter that you obviously have limited experience in, including the semantics.

No they can't Cote. You are confusing learning disabilities with learning difficulties. Very different things. www.mencap.org.uk/definition

Thanks for that Owl

I was replying to quirky who said " Learning difficulties are the low IQ, surely". They are not. As I said, people with high IQ can also have learning difficulties.

I have mistakenly used the work "disability" instead of "difficulty" towards the end of my post and for that, I apologise profusely although I would have thought that it was obvious from the quote I was replying to that I was talking about "difficulty".

FYI English is not my native language. Learn to write a second language as well as I write in English before you spew your sarcastic bile about my "limited semantics".

Well if we're being pedantic..

Quirky was responding to this post of yours cote

*"The "problem" people have with DS is the learning disability."

And the low IQ, around 50-60 on average IIRC.

"They just have a different life" is a euphemism*

Where you do confuse disability with difficulties.

50-60 is way above my son's measured IQ, so god knows what sort of vegetable he is.

"exactly what concerns many of the posters on this thread. That is that the decision is based on a preconceived opinion that is not based on facts or reason"

Is it not fact that people with DS have very low IQ and short life expectancies? And is it not a decision based on reason to not want one's child to have these problems?

"So the true nature of the disability is not understood and the true value of the individuals concerned is not appreciated."

The individuals concerned are of course valuable, by virtue of being human. They are loved, cherished, and as mentioned downthread, can and do become useful members of society. That is not and has never been in question IMO and IME.

Hopefully the link has been helpful then.

Devilish - That is me quoting zzzz's post below, as you can tell from the quotation marks you have copied and pasted.

zzzzz Mon 23-Nov-15 14:51:03
The "problem" people have with DS is the learning disability. The rest of this is just pussy footing around.

Yes, it's been really helpful. I've folded it up and made it all corners in case you want it back.

Er yes but you added the 'and the low IQ' which quirky corrected

I meant that Learning Difficulties in DS are the low IQ in DS. As we were talking about DS. Many adults and children with DS have MLD (Moderate Learning Difficulties) and SLD (Severe Learning Difficulties).

Language (especially at a bureaucratic level) is very important when discussing someone with severe and complex disabilities, the differentiation between difficulties and disabilities is extremely important as the differentiation is significant. As strong advocates for our children with disabilities, it is our duty to point out and educate, if we feel necessary. Experience and knowledge is key to understanding.

Cote, I apologise if my comment regarding semantics felt personal as English is your second language, but my post was not with that intention or direction.

Corrected? This is what quirky said:

quirkychick Mon 23-Nov-15 17:11:34
Learning difficulties are the low IQ, surely.

She said "difficulty" not disability, which I now understand is a grave error worthy of a public flogging on here. For some reason, she didn't get told to extend her reading matter when trying to purport on a subject matter that she obviously have limited experience in, including the semantics

I understand now why the difference is important to you, Owl. I don't mind such corrections and that was not the personal part of your post. Thank you for the apology.

Cote, I'm not sure why you're being given a hard time here over a word. I'm part of a large community of parents who have children with genetic syndromes that typically cause severe learning disabilities/difficulties. The words get used interchangeably and I'm not sure many of us know which is 'correct'!

No worries, Orange. I know why.

It's disabilities, not difficulties.
One suggests an intellectual disability (which is outdated terminology in itself) the other is in relation to a specific learning difficulty (SpLD)

It's a semantic minefield IMO. And I say that as a well informed parent carer. I understand the terminology, the differences and the nuances of meaning but that's mostly because I work in healthcare. Most other parents I meet don't use language uniformly so I have no idea how the general public can be expected to, although sharing information about why use of certain words and phrases can be important is, I agree, worthwhile.

I think referring to kids with a low IQ using the world "problem" and saying having a different life was a "euphemism" were the real issues with that post.

Erm... I don't have limited experience I have a dd with DS and part of her dx on her statement (changing to EHCP) is SLD Severe Learning Difficulties from the Educational Psychologist. So it is educational language, it is the terminology that the Complex Needs Schools here use too.

It is, of course, part of her disability.