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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

Alys I did thank you

I'll definitely give it a read. Day to day I'm now generally ok but this has made me realise maybe I'm not as OK as I thought. I'm surrounded by very supportive friends and family so I have never really had our decision questioned. Maybe that's what I'm finding hard.

I agree with whattheseithakasmean My body. My life. My right to decide.

And likewise Your body, your life, your decision

To the OP - I don't think your choice is wrong or that your child should not have been born or doesn't deserve support/opportunity etc

i refused any kind of testing all three times I was pregnant even though I was considered ( according to mw) high risk for having a downs baby and I too got a lot of stick from the midwife for it . I think education on pro choice needs to start with the medical profession

I had watched friends of my parents now starting slow down with an adult child who is in some senses more like a toddler. Yes, she is happy some of the time (but very unhappy & confused a lot of the time as well), but she is also fully grown, prone to temper tantrums and they are starting to get to an age where they can't physically restrain her from causing harm to herself or them. It's heartbreaking to see.

I watched friends at school who couldn't do the things other things could, because the needs of their sibling with DS had to take priority. As adults they are now planning how care will work if their parents outlive their sibling (not a given, but a possibility). Sibling is non-verbal, wears a nappy and has a host of other health issues.

If I got pregnant I would test and yes, I would abort. DP is completely onboard with this as we've discussed it given if we did ttc, we would be higher risk of a number of things due to age & our own medical history. Ultimately neither one of us want to be carers to adult children in our dotage (whilst recognising that there are no guarantees).

I can't understand mourning the fact that fewer people are being born with a severe disability tbh. IMO aborting a pregnancy due to disability is completely separate from respecting and supporting the children and adults who are already here.

A very difficult thread because we are, I think, confusing two different issues... The love, support, commitment to actual children and real people like the op's daughter and many posters' dcs, which no one is doubting, questioning or invalidating - they are people and fully deserving of love and of a life as full and valued as anyone else... And foetuses who may or may not have a disability and who are terminated and will never become people. If you don't understand this distinction then I think you're really not pro-choice at all.

It is fully possible to advocate for disabled people while supporting termination for disability... or for any other reason. Statistically, I think, far more terminations are performed on healthy - or presumed healthy- foetuses than on foetuses with known disabilities. we do not judge women for terminating for economic reasons, for example, so why judge them if they terminate for DS?

By this logic we'd be back to mourning all the "unborn children" of murderous mothers, talking about a genocide... No, sorry. That's a slippery slope and a morally repulsive position (to me, at least) that undoes decades of fighting to legalise abortion.

Btw, Op- you are brave for talking about this and I was moved by your post. Your dd sounds lovely, and no one -not one of us, I'll bet- thinks for a second she shouldn't have been born. i hope my post makes that position clear.

One thing- the 94% is a figure calculated from all those who go forward now for a diagnostic test through invasive testing which has a miscarriage risk. That means, in effect, only those who really really want to know, to the point of risking miscarriage, have the test, usually because they know they will have an abortion if it is positive.

Lots of people do not have the nuchal screening, and of those that do, many do not then go on for diagnostic testing even if the risk is reasonably high, precisely because they don't want the miscarriage risk or they know they could not go through with an abortion so there is no reason to take the risk. Up to 1/3 or more of women decline some stage of this- so they are opting out before it gets to that stage.

NIPT will change this because it removes the miscarriage risk, so the 'benefit' of information only testing is much more obvious and I think you will get more people testing for information only than happens currently with invasive testing.

'Do most people feel the world would be a better place without DS? Or ASD? Or other disabilities?'

No, people feel that women should have the right to decide to terminate for whatever reason she wishes without judgement.

When I was pregnant with my first child I discovered I had a balanced translocation that causes multiple miscarriages and the risk of a child with a very rare, very life limiting genetic condition. It isn't Down's syndrome, but is similar in that it results from a partial trisomy. The health impact is more severe than Down's syndrome. The excruciating wait for an amniocentesis meant I hid my pregnancy for 18 weeks and tortured myself over what decision I might make, whilst constantly researching this very rare condition to understand it better. My doctors had not heard of the condition.

The woman who had founded a global support network for parents of children with this condition was the most incredible support I had. She told me that whilst she loved and adored her child and would gladly give her own life for her, if she were to discover another pregnancy with the condition she would terminate. Her compassion and honesty were exactly what I needed. She didn't view my need to make this heart rending decision as a judgement on her beloved daughter. She saw it as the need to make an informed choice about the enormous impact of having a child with this condition.

One day I sincerely hope that this condition is eradicated, because it causes children to die so young, gives them a health burden so high that it is almost unbearable. It isn't wrong to wish for good health for every child. Carriers of this condition suffer miscarriages and worry about passing the genetic flaw on to future generations to suffer the same fate.

We can celebrate the lives and love the wonderful children already with us whilst hoping for a future of good health for any future children. The two things are not incompatible.

Wow, I was starting to read through these posts but got to Buggersmuddle and don't think I can.

Lovely, moving post, Hairy. Thank you.

Agent thanks for painting such a wonderful picture of how my daughters life with support will be. Cheered me right up.

I agree hazey.

My DD will be a toddler like adult. I treasure her. I don't want people thinking it's heartbreaking to see us. People should think before posting on these threads really.

Being prochoice is the bottom line here.

You can say you are prochoice without having to describing how dreadful would be to have a child with a disability in order to defend the choice to abort.

I don't think this thread is here to cheer anybody up.

We are talking about disability and termination (sometimes at a relatively late stage) of the pregnancies that are revealed to have a disability.

That's an important, vital and moving discussion, not one to give support or cheer. That doesn't mean we shouldn't have it.

Anyway I think I will hide this thread.

Am pro choice but it's not very enriching to read what a hideous life my child will have with disinterested carers trailing after her in a cafe while I am broken and worn into ground.

Brocklady have it to your hearts content

It is possible to just say you are pro choice and people should have right to choose though. Just saying

Sorry, Fanjo. I didn't mean to upset anyone. We're going through a hard time at the moment with my sibling, but it's probably not the right thread. I'll hide it now and go and post on something more cheery, like the I'm A Celeb thread.

Because you don't agree isn't a reason to take the ability to make an informed choice away from other people. it doesn't take away from the person your DD is or NY other child with a syndrome.
I am pregnant with my 12 week scan next week, I will be accepting screening for Down Syndrome and other syndromes that are detectable at this stage, a positive result would mean we had to do a lot of thinking as a family about whether we could support a child with high needs (and I know there are never guarantees) not only for myself and DH but for 4yo DS too as it would have a massive effect on his life too. And yes termination would be an option we would consider - hopefully not a choice we will have to make, but one that if we feel necessary is our choice.

Perhaps, Fanjo, you will have hidden the thread by the time I write my reply.

Nothing in life is a given. My area of the country is reasonably well resourced for children and adults (though the latter only to a certain point) with disabilities.

Certainly, I know adults with disabilities (for the purposes of this thread I mean disabilities such as and including Downs Syndrome, not physical disabilities) who are living happy and interesting lives and are fulfilled, content and stimulated.

But just as anyone who has a child gives some thought to the future, so to do parents of disabled children. In many cases, the thought they give to the future is that the kindest thing to do is to terminate the pregnancy. Do I understand why? Absolutely.

Until someone states all children with disabilities should be terminated, it's a pro choice argument, and you don't have to do it yourself to defend someone else's right to do so.

It's entirely your choice.

Just sad people feel like that and can't see that these kids can be rewarding.

Anyway off to hide thread.

I wished people would put their efforts into making sure children with disabilities are catered for, their services aren't cut, their vulnerability isn't made worse and their life is valued enough for them to reach their full potential. Those of us with children with disabilities often have not got the energy to fight any further than our own family. If you can put that energy in and make our lives easier in any way, do so. Helping other people who are more vulnerable than yourself is so important.

The fact no one seems to care is far more upsetting than the reality of having a much loved child with severe and complex disabilities. My child has an unrecognizable/un dx able condition (they haven't got a clue what caused it, there is nothing actually 'wrong') btw. She's still a human being and she's much nicer and kinder and much more funnier than most people I have ever met with or without disabilities :o

Sorry if this has been picked up already but wannabe you say " In the UK, 94% of pregnancies where downs is detected are terminated, which unfortunately adds weight to the statement that testing is there for the purposes of eradication and nothing more."
But if a non invasive test were offered then maybe others would test. We didn't test as it wouldn't have changed anything but I am a planner. If there had been a non invasive way to know I might have gone down that route.
so what I'm saying is the people at the moment who test may be self selecting, the people who would terminate.

I am not sure hazey what your point is about my comment. I've seen some people have a really tough time & not getting sufficient support with severely disabled children. What exactly is wrong with being honest about that?

I think it's very sad if pregnancies are terminated because of the dire lack of support for adults with LD's. What a shocking statement about our society.

And yes that lack of support is true - I could fill mumsnet with with the ludicrous arguments i've had with social care (managers mainly - sat in an office with no fucking idea) over the last year.

But in part that comes from the lack of value learning disabled lives have. Two sides of the same coin? If their lives were valued they would be better supported? And there would be no reason for termination. In life the authorities treat my son like a tin of beans to be shunted over here & dumped over there, so it's not surprising that not living is seen as a better option I guess.