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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

I have been told twice now by other posters on this thread that I am not pro choice.

For clarity, I identify as pro choice but termination for this reason troubles me. Partly because I have done it and regretted it, partly because I now have a child with disabilities and partly because of the societal/attitudinal impact.

It is not a clear cut issue in my head.

Of course people shouldnt be forced to have kids they don't want.

It's just a shame they have such a dim view they don't want them, is my and others point I suppose.

What about a diagnosis that means that child will die during or soon after birth?
If you're saying people shouldn't terminate because of pre-natal diagnosis then this is part of it. Do you think termination does not spare even a tiny bit of heartbreak?

I'm not talking at all about individuals terminating pregnancies (I support termination for any reason up to birth being a somewhat pragmatic sort) - but there are all sorts of judgments made about the value of learning disabled lives on these threads - often from a position of ignorance. I comment specifivally about severe learning disabilities as that's what I have 16 years daily experience with.

I don't think anyone 'should' do anything wrt termination. None of my business. But there is a discussion to be had around the value placed on LD lives. I wish people would stop seeing my son as a vegetable or a tin of beans to be shunted off into a corner (yes SS I'm looking at you). HIs life is as valuable as the lives of his NT brothers.

I've even had people tell me about their relatives termination along with the 'wouldn't be fair on the other children' line in front of him How crass & what a statement about the value they ascribed to his life.

The problem with that Fanjo is that if your argument is that disabilities are not properly supported and that's why parents choose to end these pregnancies (I'm not sure this is the case) then we all have to accept that if these pregnancies are not ended the onus to support the children born as a result will have to come from somewhere.

Care work is badly paid as it is. Attempts to ensure good carers by increasing the pay will impact on everybody.

Many, many people needing round the clock care is hugely expensive.

Social support and respite is also expensive.

Meanwhile, our society is ever more complex and our population is not small - the opposite - and in need of funding in health and education and other vital areas. To state or imply that people are not continuing with their pregnancies because of lack of funding or support is misleading I feel - in most cases it's because they don't want a disabled child.

The reasons as to why they don't want a disabled child are many and varied and you might not agree with them all - but I don't think it's to do with disabled people not being as valued.

Who is saying people shouldn't?

Not me. Am saying it's a shame IF people do it based on not understanding things can be good.

If you have clear understanding things will be bad then obviously fair enough

_you are being needlessly defensive here. No one is judging you and this thread was primarily about DS not a fatal condition.

So to summarise Fanjo, you are saying you are supportive of the choice people make but you feel if they knew the reality of having a disabled child they would make a different choice? Have I read that correctly?

I was addressing alys.

Brock I don't think there's much point in my talking to you. You seem determined to think I am judging people when I am not.

But Fanjo you don't know their circumstances which will be 90% of the reason behind their decision making. Children with complex needs can create financial strain, housing worries and relationship breakdowns. If I had a child with a learning difficulty or disability we would have no income as my DF would have to quit his job as he works away, in turn we would lose our house as we wouldn't be able to pay the mortgage.

Why would he have to quit his job? DH and I both work?

It's that sort of assumption I think is erroneous. It's not a given.

I'm asking a genuine question Fanjo as I must say I have found your view a little difficult to follow - you have said you are pro choice and yet in the same post have used words that indicate you are the opposite.

Brocklady obviously it's not that clear cut.

But I feel to assume it will always be a miserable existence is wrong.

I am supportive of people's right to choose but I worry that some do so based on not understanding and therefore miss out.

That's as clear as i can be.

I haven't used any words to indicate i am not pro choice.

We were told that our baby was very ill, probably a heart defect and would be unlikely to survive to term. So I believe we did the kindest thing, we went through heartbreak but our baby felt no pain.
Not sure why it is assumed that because the diagnosis is trisomy 21, they will be otherwise healthy.
I'm so sorry for those who are upset by this thread
We were very upset too at the time. It's important to remember that those facing this difficult decision deserve lots of support. I was shocked by the lack of support from our hospital LGI in Leeds. No offer of counselling or anything afterwards.
ARC - antenatal results and choices - are a fantastic charity who were very supportive and will help you in either decision.
www.arc-uk.org

Are you misunderstanding "it's a shame " to mean they should be ashamed? Maybe that's a Scottish phrase. I mean it's a pity for THEM.

He often goes away for up to 9 months at a time in a dangerous job. He doesn't live in our family home during the week. I would have no support day-to-day at all. You can't make that judgement for people though as you have no idea what their reasoning is. You can't just say "oh well they terminated because they don't understand how wonderful life with a child with ds can be" if they are worried about losing their house or their income or any other personal reasoning.

I make no judgment of people

I think people would find they could cope with a lot more than they think. But I don't morally judge them. This is getting tiresome

You're saying "it's a shame for them" which would suggest, yes you are judging them and weighing up their reasoning to be unworthy.

We've had a pretty miserable time this past year due to ds1's LD's - (& ongoing) . I still think a world without LD's would be a much poorer and greyer place.

I know people without any particular challenges in their lives who are much more miserable than me

I didn't actually direct that post specifically at you fanjo, but many have said that terminating for reasons surrounding pre-natal diagnosis is, for use of a better word, wrong.

Fatal diagnosis is part of that no?

And actually a few of you may feel you aren't judging people who have tfmr but you are....maybe unintentionally but you certainly are.

But have those people judged you for having your child? No. Every post I've read had stated that they think you are brave etc etc.

Wouldn't the world be a much nicer place if people just let each other make their own decisions without judging them and just got on with making their own lives as happy and fulfilling as possible?

"In reality 10% of dcs have some sort of additional learning need and t21 is usually mild."

People with Down Syndrome have an average IQ of about 50-60. That is not what I would call a mild additional learning need by any measure.

You're joking aren't you? You're often judged for daring to give birth to a burden on society.