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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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].

But some things can't be altered, yes we need more money, more support, better inclusion and support in education etc but my son would absolutely take away his asc if he could and seeing how some aspects of it make him struggle to yhe point of tears. Frustration, anger and misery whether that's social stuff or sensory issues I would take it away if I could. He is high functioning and realises he is different. We have said it's fine, he knows hos brain is wired a bit differently. Everyone is different that's what makes the world such an interesting place. But god I wish he didn't have to struggle and no matter how much funding or how perfect the world could be he would still struggle so yes I would take it away. Though I do also find myself thinking some of his asc and his quirkiness is part of HIM.... So he would be different but different isn't lesser or worse.

Well the world could do a lot more so that people with disabilities didnt struggle.

Blanket eradication of disability is jot the answer.

Yes. Where does my DD who doesnt suffer at all, and is extremely happy, fit in to this "better if her disability was eradicated" plan?

She will be more expensive and contribute less when older, but suggesting she shouldn't have been born because of that is veering a bit close to Naziism for my liking.

So if you could wave a wand and ensure that no child was ever born with a disability again you wouldn't? I would. It is beside the point that a child is worth the same disabled or not. The point is that no one would wish a child to suffer pain, or not being able to see or hear or run.

not all people with disabilities have those issues.

for someone who cannot hear there is sign language.

etc etc

Of course there are a million and a half degrees of disability. But, still, the bottom line is that I would want my child to have the fairest start in life. They don't have to be tall, beautiful and with an IQ of 200, but just to be up at the starting line, not half a mile back and with huge hurdles to jump throughout their life. Some of us have enough of those tripping us up anyway. I really can't get my head around some deaf activists. It's selfish, pure and simple, to wish something upon your child because it suits you .

I wonder what posters with disabilities would say about this issue. I know some have said they would eradicate disability due to their pain but I would be interested to know what the majority of people born with a disability would think about this.

My daughter has a high degree of disability BTW. But doesn't suffer.

I suspect Rhoda's view and mine is more typical in the UK given the Down's abortion rates. However it is very important people discuss these issues particularly given scientific advances and increases in testing. I suspect had I been born with thamlidomide effects I would wish that were not so but it must depend on the condition. Eg I've freckles. I am perfectly okay with those.

If we could have the same children but without their challenges most parents would prefer that. Luckily we live in a free speech liberal democracy where women have a right to choose abortion and can allow operations on the baby whilst they are pregnant, and gene testing before and after conception and all the options. We get the right to have different views and make different choices which is how it should be.

"I really can't get my head around some deaf activists. It's selfish, pure and simple, to wish something upon your child because it suits you ."

Have you ever met a profoundly Deaf person who wants a Deaf child. I have met such a person and I understand their view point even if I don't agree with it. Its comes down to being valued as a human being and respecting difference.

Life is not always a rat race. There is no starting or finishing line. Sometimes its nice to enjoy the journey of life without having to be the fastest, richest, best looking. We all want health and happiness for our children and sadly good health or wealth is no guarentee of happiness. I have met children who are bright and appear to have everything in life, but their lives are wrecked by poor mental health.

People with learning difficulties can do contribute to society if only they are given the chance. It does not a degree to push trolleys around the car park of tescos, sort rubbish at the recyling depot or a mutitude of other simple jobs like cleaning. A stark difficulty is that many employers would rather take on a Pole with no English to do an unskilled job than someone with learning difficulties. Uncontrolled and unskilled immigration has made life harder for people with learning difficulties to get jobs. So has the idea that you need to be "qualified" for jobs which were once considered unskilled.

That is one of the worst posts I have read on MN.

My child has a learning disability and wakes up every day actually bouncing with happiness.

I will refrain from saying more.

Sorry but I am actually expecting someone to come on the thread soon and advocate euthanasia for people with disabilities.

Learning difficulties are the low IQ, surely. DS can have physical disabilities too, as the extra chromosome is in all parts of the body i.e. each cell. The extra chromosome affects different individuals differently, it makes sequential thought patterns and memory tricky. Dd2 is generally happy but can get quite frustrated, due to language delay. There is a lot of research into teaching methods to help children with DS and, I believe, some drugs to into prove cognitive ability.

Obviously I wish she didn't have DS, but we love her regardless. As our paed said when she was born, DS is part of who she is not all she is.

Yy, to services to support children and adults with disabilities might make people less frightened. I haven't actually come across too much disability discrimination, mostly from a much older generation. But I am quite bolshy . I have quite a thick skinned where dd2 is concerned.

I really am not offended that others have chosen to terminate. When we had a "high risk" nuchal scan I decided not to have an amnio, but it was a close decision. It wasn't very clear cut for me.

But, still, the bottom line is that I would want my child to have the fairest start in life. They don't have to be tall, beautiful and with an IQ of 200, but just to be up at the starting line, not half a mile back and with huge hurdles to jump throughout their life. Some of us have enough of those tripping us up anyway.

Well, by that argument, black people should stop having children altogether. And in fact, in my 70s youth plenty of people argued mixed race families were an abomination and the children would have miserable lives where they wouldn't fit in anywhere, better not to have any.

It's a circular kind of argument where prejudice/phobia justifies eradicating the people who are the subjects of the prejudice, instead of eradicating the prejudice.

There have been some startlingly crass posts on this thread, but that does take the biscuit.

I m glad I live in a UK where we can have different views. I didn't have most testing with my twins as I would not have risked the life of one and not the other and am not keen on abortion anyway but respect women's rights to choose.

Ones own personal free choice is one thing.

Pontificating about eradicating all disability for the good of people supposedly suffering, or the social cost is another.

Quite, Fanjo. I don't see that a world without disability would necessarily be better. Possibly, but it is not obvious to me that it would.

Having a high iq doesn't make people pleasant or have acceptable opinions, as this thread so readily demonstrates. Cote, you really are astonishingly narrow minded and I'd say that if I had a child that was disabled or not, whether I'd terminated for disability or not, to be quite honest. You ought to be ashamed of yourself.

I don't think a world without disability would be better, I doubt it would be possible so many things can't be tested for causes aren't known and so many things can cause disability anyway accidents, illness etc. Plus just old ages causes some degree of disability.

I think pre natal testing on the whole is a good thing, but parents need to be making a properly informed choice and there needs to be proper support, understanding and obviously money and all that brings to help those with disabilities.

I am pleased to hear that some don't suffer and I don't know that peoole have said everyone with a disability suffers? Differences are what makes the world what it is. My son does and currentky is suffering. The situation is exhausting. Frustrating and can feel relentless and he is high functioning. Are a child's extra needs easier to deal with Maybe if they don't make the child themselves miserable? I think that's the thing it's so personal some peoole with disabilities are perfectly happy, others aren't. But then that's life all over. But I do wish I could get rid of the bits of ds2's asc that make hi struggle. But there are some aspects to it that are very much part of who he is...
I think as a parent I wouldn't choose to make my child's life more of a struggle. It's a lottery anyway and there are never any guarantees.

Thankfully I have never been in the position where I have had to choose to terminate or not a pregnancy. Currently 21 weeks and relieved the 20wk scan didn't show any issues, again there still could be issues but I don't know so of course I will deal with whatever I get. I love this baby already. But had I been faced with issues I would have wanted to be able to make an informed choice. And that's what we want surely for women to be able to make an informed choice?

Currently many in the medical profession have a negative view of disability? Is that because they only see the worst case scenarios, the hard side to it, they don't get to see the positives? I don't know and I don't know how we can change that perception. I hope organisations like arc? Are helping in this respect and I guess forums like these where we can share experiences both good and bad.

Why on earth would I be ashamed?

All I said was that learning disability is not the only problem people have with DS - very low IQ is another. And that "they just have a different life" is not an accurate representation of the difficulties.

Do you think it is rude to say so? Surely this is not news to anybody here.