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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

Thinking a foetus is a person because the tiny lump of cells at 12 weeks has extensions we can recognise as hands and feet, you would not have been able to end your pregnancy despite the fatal diagnosis.**

Well actually my son was born at 21 weeks and he looked just like a term baby just smaller. And I still did end my pregnancy even though I thought of him as a person if you think that makes me a murdered or anything else for that matter then go ahead and think that because you don't know.

But hey like I said agree to disagree....

Most people are capable of at least a little empathy...

zzz - Please stop putting words in my mouth.

Alys - re "I still did end my pregnancy even though I thought of him as a person if you think that makes me a murdered or anything else for that matter"

I don't think anything of the sort and frankly can't imagine why you would think I do, especially after having said that I had amnios and would have terminated for genetic disorders (like you did) so clearly don't think of it as 'murder'.

I just said what I thought and that the laws agree with me - fortunately so, or you would not have been allowed to end your pregnancy.

Not sure how you got offended at that but I am sorry that you did.

zzz - This has nothing to do with cut/paste. You are saying stuff that I never said or suggested such as "You feel the law says X so everyone must agree."

No I fucking don't.

Stop "multitasking" and read posts properly.

You're not sure how I am offended at you calling my child just a foetus like he didn't matter? Like he wasn't part of me, just like your children are part of you?

Yes they are your thoughts but that doesn't mean that your opinion doesn't offend me because ''that's what the law says''.

Yes I am thankful that the law states that or I would have had to watch my son suffer in pain and live only a few hours but can you not just see how reiterating the fact he was ''just a foetus'' has offended me?

It's not "just a fetus like he didn't matter". You have completely misunderstood what I was trying to say but I can understand the grief that is pushing you in that direction

Anyway, nothing I can say that will serve a purpose here because this is not about ideas anymore but feelings. And there, no such thing as right or wrong.

I cannot imagine that any woman makes either the choice to terminate or keep any baby with DS lightly. I think it is highly personal. I do think the NHS push for amnio and termination, we made our own research after a "high risk" nuchal scan. I wouldn't judge either decision.

zzz - Your sentence "you could believe that a foetus is "a person" from conception but that a mother had the right to kill that person if they thought it best" talks about having the right, which is a legal matter.

I tried to explain the inherent contradiction in that sentence, as far as laws are concerned, because you talked about having "the right to kill".

If you had said that a pregnant woman can think of the fetus insider her as a person and still decide that it is best to end that pregnancy, I would not have objected.

I agree, quirky. I'm glad my DH pushed me to think about it well before testing (because of my age I was being told that there was a higher probability of DS).

We decided to test and not to terminate.

but the law is irrelevant when it comes to emotionally charged choices. Just because the law states that the pregnancy can be terminated doesn't mean that baby is less of a baby in terms of the person having to make the decision.

The suggestion that "it's just a foetus" is deeply offensive. Can you not see that?

Regardless of my own stance on termination, the fact is that there are women on these boards who have made the choice to terminate in difficult circumstances, at a point where they knew they were giving birth to a baby. The legal definition does not change that fact.

In fact, when people go for their twenty week scan you don't hear them talking about how "we saw the foetus," do you?

Incidentally, from 24 weeks the law defines that a healthy pregnancy cannot be terminated. Therefore if the baby is delivered after that time it is termed a baby. However a pregnancy where disability has been detected can be terminated to term, does that therefore mean that in law the disabled baby must be termed a foetus rather than a baby in order to preserve the legal right to terminate? surely this then gives disabled babies over the 24 week gestation lesser value to non disabled ones....

wanna if your child is over 24 weeks you have fill out a birth and death certificate, under 24 you do not. They are considered to be a "living" person in the eyes of the law after the 24 week point disabled or not. The same goes for stillbirths and miscarriages.

I think it's really off to argue about semantics to someone who has had to give birth to her own child at 21 weeks. :( alys, I hope you are okay. This thread really isn't very nice and has become personal throughout.

i also hope alys is OK. i found that hard reading and have not been through what you have,

I can't imagine many would think of a 21 week foetus as anything other than a baby

Personally I think whatever the law says the person carrying the foetus gets to decide when for them it becomes a baby/a reality/a loss. I had an 8 week miscarriage & didn't really think of it as losing a baby, but I may well have had it been my first pregnancy & I certainly would have after 12 weeks.

wannabe and crumbly The strict legal position is that a fetus is not a 'person' until birth. Therefore a fetus cannot be discriminated against as only a 'person' can be - thus the Abortion act does not conflict with the Equality Act.

My 16 week DD2 was very much a person no matter what the legal definition wants to say. She had the longest fingers and toes you could imagine just like my DF which she had obviously inherited from him.

I was just pointing out the technicalities of it that people aren't aware of unless you have been through the paperwork process hence the quotation marks as when it is in real life the law means nothing. I'm very sorry if anyone thought it in ill-taste, I was just answering a question.

I support current English law and parents' rights to choose. I think it would be a good thing if there were fewer downs children and I write that even having had a baby sister who had it - she sadly died very early on although I am afraid I also see that as a blessing which I accept is not something those bringing up a child with difficulties whom they love would agree with. We are all different.

Most parents in the Uk will not keep a baby to term if it has down's. That is the fact of the matter however much that might upset parents whose children have it. Those who don't want the test can continue to refuse it. if a test told me my child had 100% chance of downs I would abort.

Someone above wrote "surely this then gives disabled babies over the 24 week gestation lesser value to non disabled ones...." - that is English law. The law regards them of lesser value, yes and most parents in practice support that view although to be fair very few babies of any kind are aborted late in the UK. Most abortions are fairly early on so late abortion is not really a huge issue.

Also I love all my children but I would certainly wish I could have ensured one had not had dyslexia for example. Why would anyone want to wish on a child something that makes life harder that they could avoid including things like propensity for depression even?