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

[MumsnetGuestPosts]

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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

An adult with the IQ of 50 has the mental age of a child.

Do you seriously not understand what I meant? Honestly, it feels like you are actively trying to find fault with and take offence at whatever I say.

They are then just an adult with an IQ of 50. Not a child.

It's quite easy to find offence in what you are saying I'm afraid.

Cote and I have the views of most peoplein the UK - that we would of course love a child we had with any disability but that we would prefer not to have one and that is why there is the 94% UK abortion rate for down's. Obviously that is very upsetting for those who love their children who have various disabilities. Trying to trip us up over language doesn't really help the issue.

The difference is that most people in the UK would prefer not to have a child with down's and if that means there are then none born we do not think the UK is worse for that. That does not mean the children of those on this thread aren't lovely and loved of course. Some people don't share our views but we don't have horrible uncaring views at all. We just differ with some people over this issue. Someone Iknow who is nearly 80 is really struggling as to what to do with their daughter who must be 40s with mental disability. Her siblings probably cannot easily take her and there is not a great amount of good adult care around.

That is depressing dixie.

Not going to engage with you further Deo.

My motivation for posting was not to pass judgement on anyone, either side. It was to try and give a realistic view of what value someone's life has who has a severe and complex learning disability, from our perspective. Someone who has real actual experience and I was motivated to do that because of the misinformation and ingrained prejudice and ignorance that is trotted out.

My daughter is a young lady, thank you :o child is biological definition, birth to puberty or the description between a parent and ANY age child of theirs! It reminded me though, I used to work with a guy who had downs syndrome (and I still sometimes bump into him, IN THE PUB!) And to suggest he is still a child is v he's a man!

Sigh. I do realise that someone at the age of 40 is an adult. Obviously, I was talking about mental age which I already clarified below for those of us who deliberately nit pick and are determined to misunderstand.

Not sure what "Dark Ages" has to do with saying an adult with an IQ of 50 has the mental age of a child. I'm sorry zzzz, but it is the truth and you know it.

I don't know why Deo is getting attacked for that last post, either. What seems to be the problem with this:

"The difference is that most people in the UK would prefer not to have a child with down's and if that means there are then none born we do not think the UK is worse for that. That does not mean the children of those on this thread aren't lovely and loved of course. "

Well am not surprised you don't see the problem with it.

Where is this problem that is visible only to you and possibly to a few others on this thread?

"The difference is that most people in the UK would prefer not to have a child with down's" >> Fact

"if that means there are then none born we do not think the UK is worse for that" >> This seems obvious to me but if you don't agree, please explain how UK population would be worse off if it did not have people with chromosomal abnormalities.

"That does not mean the children of those on this thread aren't lovely and loved of course" >> Presumably you agree with this part, as do I.

Yes, because determining whether an adult is actually an adult or a child, the only thing we take into account is their mental age. Not their age or anything simple like that. I think you'll find the term is vulnerable adult. They are not children.

I wouldn't say this "You could say something like "I love my child with dyslexia but would MUCH rather not have her. I would prefer not to have a child with DS and think that that if no more children with DS were born the UK would be a better place." "

I would say
"I love my child with dyslexia but would prefer she did not have it and if I had a choice when I was pregnant or before I got pregnant I would ensure she didn't have it. I would prefer not to have a child with DS and think that that if no more children with DS that would be kinder and better."

Precisely. Who would it be kinder and better for? To think that way would be to consider disabled lives as lesser value than non disabled lives.

Been following this for a while (posted earlier on, but then life got in the way)... As an outsider to this debate, no matter my belief on this topic, I don't think you'll ever get to an agreement. One side is talking about aborting a foetus, the other is talking about loving, supporting, and advocating for a child or adult ie an actual person.

I think the two are not mutually exclusive. Most people who would and have terminated a pregnancy (with or without known genetic abnormalities) would wholeheartedly love their child, with or without genetic abnormalities. Nor do they wish people with disabilities had never been born...

Terminating a pregnancy is really not the same as killing a child, or wishing children dead. I find it monstrous to imply that they are the same thing.

Likewise, I accept that those of us who don't have children with SN might never fully understand the reality of it... Perhaps this is an instance where we should all agree that sometimes it is more important to be kind to one another rather than being right at all costs

AKA, it is as if one side will not accept the views of the other. Twive someone has said I wish my dyslexic daughter had not been born. Twice I have said what I would prefer is that she had been born without dyslexia (and she has it very mildly by the way so it's not really any kind of big thing). I am sure she would prefer not to have it just as someone who is born without a hand probably wishes they had a hand. I don't understand why my view which is the view of 94% of British parents who are tested for down's is so hard to understand. Had my children had down's I would have loved and cared for them and had my sister lived when my parents died I'd have taken my down's sister in but that is totally different from if there is a choice aborting or choosing not to conceive a child who is like that.

I think it is upsetting for those with children with disabilities to hear that most parents would seek to ensure they didn't have such a child and presumably ify ou usually mix with women who have similar children you rarely get to hear that view.

It is a very valid question to ask - to whom am I saying it is kinder if disabled children are not born. I would say you almost owe it to the other children in a family and also your spouse and relatives, never mind the economic burden which sometimes falls on the state and other tax payers. Sometimes the child will suffer even with down's, too. I accept we can learn a lot about ourselves as people by caring for those less forutnate than ourselves or those who need help - that is the moral good but there are more than enough people around needing our help without uncessarily causing to be created or retaining pregnancies of that kind. I also know the religious view - that a God, were there one, gives us what is right for us to have and that the tiny bit of time on this planet compared with eternity is as nothing if you do good here etc.

All these are important issues for society to debate which is why I like the thread. If those with disabled children are upset that the majority in the UK have different views then I am sorry as I genuinely would never want to upset others and we are only here talking about conception and abortions. I also appreciate how very hard life can be with a disabled child. Parents who bring them up deserve our admiration.