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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

OK Devilish - I can see from your posts and from others that your son has:

A supportive extended family in the form of TWO parents and TWO siblings
At least one of those parents and probably both is articulate
A disability severe enough to need a social worker (that's important - many disabilities fall 'under the radar' a fair bit in that for the person living with it they are crippling but to the rest of the world they just look quirky or peculiar.)
You haven't mentioned finances but you have elsewhere indicated that you are reasonably secure

That stands in stark, stark contrast to many people who are disabled and to their families.

Relationship breakdowns or even deaths aren't uncommon. Dealing with something as a couple is one thing. Dealing with something alone is another. Remember, we aren't talking about one incident - anyone can deal with one thing alone. It's the relentless grind of dealing with EVERYTHING alone. And if your child is still a child, you have no idea - none - how much worse this gets when they turn 18 or much older. If you think it's hard meeting with the school to ensure they get the provision they need, let me tell you know how much harder it is sitting in a police station or the psychiatric unit of the hospital or a shabby lounge of the cold and lonely house they live in as they break down to you.

You keep saying you've had an 'awful year' Devilish and I would be interested to see if your thoughts are still the same if the awful year stretches onto an awful eighteen months, then two years and then stretches out into a decade and then you realise actually it isn't an awful year at all, it's just what your life looks like now and you didn't sign up for it and you didn't ask for it but you have it anyway.

This thread is about Down's Syndrome. It's also about the reality of life with disabilities - and a lot of the time the reality of this life just isn't great. Some posters - Devilish and Orange and Fanjo - have found otherwise; I have not. In my case it is perhaps exacerbated by the fact he doesn't look disabled (and pertinently doesn't see himself like that either) but the reality is, his life is miserable. A miserable life doesn't equate to a worthless life but who wants to see their child miserable?

So we all take what we know and we believe to be true and we experience to the table and make our decision.

Surely the answer is better provision and support rather than people having to go through the painful decision to abort because there is none though?

Ideally yes, but then there are several stems to that. Firstly, and somewhat crudely, the money for the provision and support has to come from somewhere. Where? How? And the more people that would make the choice to continue with a pregnancy knowing that support was available would mean it would become more expensive.

Secondly, some people will still decide that the future parenting a disabled child is not for them and I really think that's fine. You could throw millions of pounds at me and I'd still be terrified of having a child like my brother and it's not a choice I would make.

Also, support means different things to different people and different families will need different levels of support according to their own setup. If I said to someone I need support, frankly in the context of my brother I don't know what this would look like. All I know is caring for him is miserable.

badly perhaps I can explain it differently.

We know that in the UK 92% of pregnancies where DS has been identified are terminated.

We also know that about 25% of all pregnancies in the UK end in termination.

The vast difference in those figures says that, where DS is identified, people are choosing to terminate because of the disability.

Because they don't want a disabled child.

As the mother of a disabled child who has a pretty fantastic life, the making of that choice, on the basis of disability alone, sits very uneasily with me.

It says 'I don't want that in my life. I don't value it. I'm afraid of it. It will ruin my life.'

Those viewpoints affect the status of disabled people who are already living. It makes them 'other'. Something that society says it doesn't want.

I do understand that, Orange, but it isn't, necessarily, saying the life of your child is worth less.

It's someone in effect saying that the disability is not something they feel that they can cope with at this time - just as someone who terminates a pregnancy with no known disabilities is in effect saying that they do not feel they can adequately parent a child with that disability at that time.

If my anomaly scan were to reveal Down's, I would terminate. I have always known that and been comfortable with that. I also know numerous people with disabilities - mental and physical - who lead happy and fulfilled lives. My decision is not a judgement on you, and it should not be taken as such

Brocklady as you have been scouring through my posts you will know that a) my younger children cannot be in the same room as my son at the moment so it's hardly happy families b) my issues are with social care & social services not school - who have spent the last 10+ years supporting the family c) yes there are two of us but my son being 2:1 at all times - literally at all times - means my husband and I are struggling to stay in work and so on and so forth. If either of us dies ds1 will need to be in emergency care the very next day.

I'm obviously aware that this dreadful year might be ds1's future life. That's why I'm having such a deadful time with SS (because his adult package needs to be right or he'll be carted off to some godawful ATU). You clearly misread the entire thread where my fears for his future was discussed to pick out that I'm married and therefore don't have a problem & missed my 'if this is his future I fear for him' on here.

You think having a tricky difficult time means everyone - if they only knew how tricky & difficult things were- would terminate. I'm telling you that my life is tricky and difficult, ds1's life is currently tricky & difficult but I still have big issues with the value accorded to learning disabled lives.

I can only laught at the assumption that because I wouldn't terminate a learning disabled life I must be somehow having a happy, fluffy time of it. You have no fucking idea.

I think viewing people with disabilities in financial terms and as being "expensive" is not a good road to go down when it comes to the subject of termination, although I hear you.

No, I don't think that, Devilish - I'll just ignore the jibes about 'scouring through your posts' as since we BOTH have close relatives with autism it's hardly unheard of that we might frequently end up on the same threads, is it? - I think thats a decision each individual should make for themselves.

What I DO take umbrage at is the posts that state or imply disability is actually just lovely, funny, different, and that anybody who doesn't want it in their lives is wrong.

And take your 'you have no fucking idea' right back at yourself.

But I have repeatedly said on this thread that things are bloody difficult. You are saying that I'm saying it's fluffy when I've said the complete opposite.

I have also said anyone can terminate for whatever reason ther like as far as I'm concerned.

My comment was that a world without learning disabilities would be a sadder less colourful & certainly less amusing place. I believe that but it's hardly commendation of anyone who has had a termination.

Personally I think it's best of people terminating have accurate information. Or even just know there's no predicting how you'll feel or what will happen and that a list of problems doesn't actually tell you about that person's lived life. As owllady said that may not come from a medic (who know bugger all about LD's ime). I think that accurate info is important in case later on in life they found out they would have made a different decision with different infomation (as happened to a poster on this thread). Although tbh it's hard for people to know how they would respond to any of life's challenges until they happen. Some seem to thrive on challenges & sail through difficulties, others fall at something that outside looks relatively 'easy'. FWIW I thibk it's also worth remembering people respond very differently to termination - I have friends who terminated easily with no second thoughts (not for DS) & others who are haunted by their termination years later. There are potential fall outs either way.

Erm, I was trying to defend your use of language in my last post Fanjo.

But whatever. Perhaps I was wrong and people see your posts as judgemental and chippy because that is exactly what they are.

But it is a judgement against disability, Brock.

Alis.

Well that nastiness was really uncalled for.

I was merely exasperated as you said you were on the other side if the fence to me.

When I said I was prochoice, and am.

My posts were not judgmental. If they were chippy it was because of people wilfully misinterpreting me.

And putting me on the wrong side of the fence, as it were

Right - I apologise for that post, it was uncalled for. The baby has been ill during the night and clearly tiredness makes me erm well..chippy.

When I said "other side of the fence", I didn't mean to imply that you aren't pro choice. I just couldn't think of a better way of wording it. Because we don't exactly share the same view point, if you see what I mean?

But in essence I was trying to support you, even if the language I used wasn't quite right.

But it does feel like a comment about your own child. At the first scan for my third child, the guy took a measurement of his nose (?), decided there was a 1 in 10 chance of Downs and suddenly the atmosphere was terribly sombre and he said, " you need to decide what you want to do.". It's the first and last time that someone's told me I have to decide whether or not to kill my own child. And it's shocking how quickly the protection of society is withdrawn like that. I have friends who won't eat camembert because there's a ridiculously small risk of it harming the baby. But 1/300 is okay to accept all of a sudden? I get that it's my choice. But at the same time it's the social context where some foetuses are up to risk and some are not. How can that not feel personal?

Yes sorry.. I should have separately thanked you for the support.

But I was just feeling tired and exasperated last night. Full of the cold.

No worries, hope you're feeling better soon

In answer to the op - yes, with the new set of tests Down's syndrome will be eradicated ( in this country anyway )

Thanks. Hope your baby is better soon too!

@surferjet. You mean people with downs will be eradicated? The condition will keep occurring at the same rate. It's not like measles.

But living people with it will be eradicated if everyone terminates them.

Hairday- I think that's awful that it was suggested so quickly. That must have been hard to hear when you hadn't even taken in the news.
I'll be the 1st to criticise the two main hospitals near me but I can honestly say I was given the findings and I was sat down and talked through options about having a CVS test or no tests and just extra scans. All my questions were answered and there was not one person who bought up ending the pregnancy.
When I spoke to the doctors at kings where I had my CVS they told me it was an option but I never once felt pushed into it. I guess maybe that's part of the reason why I have defended my defended my decision. It was a decision made by my husband and I and not anyone else.

I also read further down the thread something along the lines of no normal person would terminate a pregnancy after 20 weeks? Am I not normal then? Am I a monster? If only you knew the whole story. Don't paint everybody with the same brush. I'm not a nasty person because I chose to end my pregnancy and he was not unwanted! Or unloved!

Yes sorry - people with DS will be eradicated.