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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

"when I say 'social life' I don't mean spending a few hours on Facebook"

WTF. I don't mean that either.

How rude.

and surely any children impact on your ability to fly to New York for the weekend.

Sorry, I wasn't referring to you personally.

& it is easier to go away for the weekend if your child isn't disabled.
Anyway, I'm at work so gotta run.
All the best to you fanjo, you sound like a fantastic mum

when I say "social life" I mean meeting friends in actual real life or going out with DH at least 2 or 3 times a week. FWIW

oh and going out to work.

well thanks surfer.. I think :)

Isn't this the point in many ways - that everyone's life is different and that everyone's feelings about their life is different?

must also add usual disclaimer that yes its not like that for everyone. Ideally it would be. Just the other side of the doom and gloom picture is all.

yes brocklady.

Except when we are talking about the positive side we have been called judgmental and prochoice, which seems unfair.

we are just trying to paint a full picture. everyones experiences are valid.

Having re-read my post last night, it was badly phrased. badlybehaved expressed my views much better.
I do not think my life has no value or that i am better off dead.
My point is that, if you could be told: Have unprotected sex tonight and you will have a disabled child, but have it tomorrow and it would not be disabled - how many would not use a condom/not have sex tonight?
People who are talking about the 'child' in the womb are, IMO, struggling with being pro-choice - if it is a child in the womb, then termination is murder, if it is not a child then it is contraception.

I'm not sure it is, zzzz

Zzz :o Years ago on mumsnet, someone started a thread asking if children could eat Chinese food :o answer being, what do you think Chinese children eat?

I think of my son as a child does that make me a murderer?

I don't know maybe I would have thought differently if he had a condition where he would have survived or if I was older maybe, or had no other children or if I had found out earlier in the pregnancy, or if my life was completely different to what it is.
But I guess I'll never know.

If loving my son and thinking of him as an actual person but still wanting to do what was best for my family and him makes me a murderer then so be it.

Surely it's simple. If someone is told that their child will, without question, be disabled before they actually conceive many (not all but many) people would choose not to have children. And do bear in mind that disability is a very wide spectrum here.

However, to suggest that the only reason why someone would choose not to terminate for disability is because of some maternal thought process is entirely wrong and disingenuous. I wouldn't terminate for disability because once I was pregnant that baby was my child. The idea that a pregnancy could go from much wanted to needing to be terminated because it didn't fit with my need for a social life is, frankly abhorrent. That doesn't mean that people who have disabled children don't sometimes have a hard time, of course they do. But disability is a spectrum. Some disabilities are more challenging than others.

But to the poster who wanted a social life rather than a disabled child, what would you do if your non disabled child became disabled? would you give it up for adoption because it no longer factored into your planned trips to new york? And if not, why not?

Sorry my last post was in relation to the Jamaican holiday :)

What I think is important is that whether you knew your child would face enormous challenges before he/she was born, or whether it was a shocking revelation shortly after birth, or whether the realisation unfolded slowly and painfully possibly over a period of years, those children are here, they are loved, they are valued, they are respected and they are entitled to live as full a life as the next person, wherever possible.

Life isn't one big picnic, it was never going to be. But if there is joy to be found in parenting a child with profound disabilities and if there is joy to be found for that child in living his/her life, then you both will be supported and more importantly entitled to find it.

We may not yet have utopia for disabled children or adults (especially learning disabled) but we do have support and we do have respect and compassion. We don't tie those babies to beds in orphanages and tell you to just walk away get on with your life any more.

Many parents in this world do still have to do that, because they have no choice. No screening. No testing. No counselling. No free BC. No respite. No benefits. No medicine unless they can pay. No access to special schools. No no rights, no options, no hope.

Your children DO matter. Just because some of us won't mourn the theoretical phasing out of DS and other similar conditions it doesn't mean we don't care about, or respect those with DS who are already here. Just because we welcome earlier diagnosis that may lead to a virtual phasing out of some disabilities, we don't welcome phasing out the right to proceed with a much loved and wanted child, YOUR disabled child - if that's what you choose.

It's a subtle but very important difference.

People who chose the left fork in the road should not be made to feel that just because others chose the right fork, it reflects negatively on them. This is not a time for judgement on either side.

Murder is not a term applied to killing an unborn child, even if that child is killed alongside it's mother by an actual murderer I believe.

And besides, given the traumatic experiences of Alys and others on this thread or those who may be reading and to upset to comment, I am appalled that anyone would be insensitive enough to even use that word right now to describe termination of a profoundly compromised baby.

Shame on you. You are welcome to your views but you need to be grown up enough to learn when it's not appropriate to spout them.

"Wanting disabilities phased out" is of course a value judgment on the lives of people with disabilities and is basically eugenics.

Making an individual choice to do what's best for your family is not and is your free choice.

Must point out again that barely anyone on this thread has a child whose disabilities could have been screened for anyway.

So people with disablities are here to stay.

Also if we are taking free choice to its extreme then the woman who wanted a child despite its disablities should not be criticised as it's her free choice.