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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

'What I am not pro, is prenatal test results being the reason for a baby to go from being much wanted to being disposable, because of disability.'

Then you are not pro-choice. If you want to dictate to women what is a valid reason for them to relieve them of control over their own reproduction, based on your own morality, then you are not pro-choice.

Forcing someone to continue a pregnancy she comes to not want, for whatever reason, is not pro-choice.

Alisvolatpropiis, it depends whether the child presents as syndromic or not. Generally speaking a geneticist makes a judgement on a collection of symptoms or diagnosisis taking physical presentation into account (and that of further family) and makes a 'diagnosis' of sorts. Sometimes that is because they believe it's an untestable syndrome - sometimes because there are other children with the same collection of symptoms. Sometimes (as in our case) it's diagnosed as non syndromic as it doesn't present as a syndrome as such. There are unique chromosome conditions now too, as chromosome testing has really evolved and become cheaper, but there are still alot of children and adults who really are a medical mystery

You can't turn back the clock on medical technology. Ultrasound is a prenatal test: would you deny women the information scans provide because they might decide to terminate?

I honestly believe most would on this thread.

Brocklady show me where I said I can't accept people choose other ways.

I merely find it sad if people assume a life of doom and gloom and terminate when a life of doom and gloom is not a given

Oh I see, thank you for clarifying Orange. I hope you get a diagnosis for your little boy soon, obviously I can't know how you feel but imagine the not knowing is very hard.

Thank you too, Owl.

Because having no babies with blue eyes or dark hair or willies distorts the gene pool that's why. Whereas anyone with those conditions will appear a freak. In reality 10% of dcs have some sort of additional learning need and t21 is usually mild.

No, it isn't a given - but I do feel we can credit people with making that decision themselves. It really is as simple as that and as such I almost can't understand why we are having this discussion on this site.

It just scares me that I might have terminated DD had I known she would have severe disabilities and I would have missed out on a rewarding and enriching experience. Personally. DD doesn't have a condition causing pain though.

I am still pro choice and respect everyone's right to choose. Just find it sad if they make a choice based on lack of understanding

My daughter has, in the last month, had to have scoliosis correction surgery. If you think I think everything is lovely, I think you've read what you wanted to and responded defensively. I'm sorry I've upset you, but I'm the wrong audience for your frustration. I understand how hard accessing medical care is with someone with complex disabilities, let alone hospital admissions.

I haven't said it's always wonderful - we've had a truly dreadful year. Fucking awful & it looks as if we're heading into a huge battle with out local authority (for adequate social care & transition to adult servives). My son is very severely disabled indeed & pretty much cannot access anything at the moment (spent today readimg up on DOLS).

But that negative shit doesn't exist in a vacuum & I'm afraid I still love the learning disability world & think eradicating LD's would make the world a poorer place. It's a community & I have made the strongest friendships (waves to owllady). Give me a party full of people with LD's over some poncy NT get together anyday.

Fanjo - I imagine it's quite rare anyone who terminates a pregnancy is absolutely one hundred percent sure they want to end it - some will be but many more will be eighty/twenty, or similar.

However, whatever choice they make for whatever reason is their choice to make.

Thanks Alis. It can be hard but we have accustomed ourselves to living with uncertainty. It's not so bad really, we hold on to the positives.

I could understand that stance devilish if the thread /argument claimed or was based around 'everyone should terminate their pregnancies if the child is found to be disabled'

But it isn't!

Brocklady again..show me where I have said ever that it isn't their choice to make.

I think a good friend of mine terminated for medical reasons..not 100% sure though as it's slightly awkward. I don't resent her choice in any way though.

I don't think many people do though Fango I think a lot of people just do not want to actively choose that life for themselves.

Yes and I think that is a shame crumbly. A shame for them. Not a shame in any morally judging way iyswim

Someone I know has a child with spina bifida and the hospital staff told her that it was the first baby with spina bifida they'd delivered for at least 8 years. I must admit I was shocked at that with it being a big city hospital. But they said most women choose not to continue the pregnancy. That's a huge number of women though.

Fanjo, you repeatedly state you are pro choice but your posts indicate the opposite. Your posts strongly suggest that a disabled child is nothing but positive (I understand why you say this) and that therefore termination of pregnancies where disabilities are found is wrong.

I shall say no more other than that I am genuinely surprised we are having this discussion at all.

I wouldn't choose my own disability for any of my children. It's something I gamble with as it may or may not be hereditary but if I could screen for it I would as I wouldn't want any of my children to have to live the life I have.

Yes and it's an undoubted fact that if people with disabilities were supported and valued in society that that would not be the case IMO

I think for people who have children/siblings/friends with a disability it is generally harder to understand why someone would choose to have a termination. And the deep protective love that's tends to develop for a relative with a disability that makes them vulnerable to society often manifests itself in the views expressed in the OP and by many on this thread.
However, I don't feel that living in a society where parents are forced to have disabled children that they don't want is a positive step. The care system has a back log of disabled children waiting for adoptive parents so that's probably not a viable alternative.
I genuinely feel that the ante natal service has a built in bias to encourage parents not to continue with pregnancies when children are found to be disabled. However what I'm not sure of is that given that such a high percentage of parents choose to terminate does that mean this bias represents the majority or is the majority created by this bias.

X posted I was addressing sister moonshine.

Brocklady you are determined I am not port choice

I am. I just think some people make a choice based on misinformation and that's a shame for them.

I have never used the word wrong here at all.

You are projecting methinks.

Sorry, I mean I agree about it being to do with a fear of the unknown - which will only get worse as there will be fewer people with these conditions to meet.

Err pro choice. Not sure what happened there.