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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

*does have DS

anothernumber That is not fair - we are talking about a test and potential abortion much earlier than any genuine pro-choice advocate would aegue against. In fact the test will reduce later abortions even if it increases overall numbers, thus making it a better position.
This is not a debate about late abortions of healthy foetuses.

In addition, those who do choose to terminate will do so for a whole host of reasons. It's not as simple as "DS = abortion". It's about the impact of a disabled child on an entire family - which may already include disabled members. It's about the associated health problems, or foetal health problems that will not give a child a good quality of life (and possibly an extremely short life).

Upthread there is a very moving post from Alys about termination in such circumstances. for your loss

if you would terminate a child with a condition diagnosed during pregnancy, how would you cope with a child diagnosed after delivery, especially if you had paid for NIPT testing?
That's a completely different scenario. One is a ball of cells, one is the baby you've just birthed and carried for nine months.
I tfmr at 16 weeks in my last pregnancy. I could have continued the pregnancy and had her die before she was born or watch her go through multiple surgeries and still have her die shortly after birth in pain and suffering. NIPT saved my DD2 from a very short lifetime of pain and suffering.

Why would you want to put disabled children into families that are uncapable/unwilling to love them and look after them the way they should be? Single parent families may not be able to afford the costs of a disabled child. Some people have other children to consider first. Knowledge is power.

Agree that the use of 'genocide' is disgusting.

I think what it comes down to here is are you pro-choice? Yes or no?

If you are not pro-choice, then fair enough. You believe that each and every PG should be allowed to run its course naturally, and what will be will be. So there would be little point in testing, except perhaps to have time to come to terms with whatever challenges await you and your disabled/poorly baby.

But if you are pro-choice, then to say you 'fear the eradication of Down's Syndrome' is really no different to saying you regret there are fewer children with missing limbs since they stopped prescribing Thalidomide, or you would be disappointed if they found a way to reduce the prevalance of profound autism. Both those conditions are fully compatible with life, they are not in themselves life-limiting, and aside from the obvious problems, babies so affected can expect full physical health and a normal lifespan as much as the next person. But that's not to say that either condition is an easy thing to live with, and most people would be cheering to see the back of them.

By making the statement 'I fear the eradication of Down's syndrome' you are wishing more disability on more children. Why? When it doesn't have to happen?

As far as I'm concerned if you are pro-choice then it doesn't matter whether the potential for a disability or genetic abnormality is flagged up before conception because of a known family history, or whether screening in pregnancy flags it up afterwards. Lots of couples undergo pre-conception genetic counselling and that might result in them choosing to adopt, or to use a sperm donor or whatever. But they are essentially doing the same thing as someone who aborts a foetus because of known abnormalities, ie. avoiding disability and ill health in their future child.

If you are pro-choice then how on earth can you be okay with the pre-conception decision but not okay with the post-conception decision? Surely when they make that decision to avoid disability is irrelevant and besides, most things can't be successfully screened for in advance of conception anyway.

As for people aborting late purely because the baby is the wrong sex, as someone upthread mentioned, there is a special place reserved in hell for them as far as I am concerned. As pro-choice as I am, anyone who would deliberately get pregnant, carry that child, love it, nurture it, look forward to it, then toss it aside so casually in spite of the fact that it has no known abnormalities or health issues only to get PG again as soon as possible, with the intention of doing the same again if they don't get what they want next time, is selfish and entitled in the worst possible way. Especially given the trauma to the foetus of a post 20 week abortion. Most people only put themselves and the foetus through that because of the most tragic, difficult and extenuating of circumstances. It's never nice, but it's sometimes necessary.

The entitled Gender Selection Aborters cannot in ANY WAY be compared to those people.

KittyandTeal
You have as much right to grieve as anyone else. Anyone who has to make that choice is admirable, which ever Path they choose. Xx

I had the NIPT with DS2. DH and I agonised long and hard about what we'd do in the case of anything showing up on screening.

Ultimately, the question wasn't about whether a life affected by a profound disability had equal value. Of course it does. My brother, who lived only a short time because of a condition incompatible with life, was beautiful and loved and valued. His death nearly destroyed our family.

Of course lives with DS and other conditions have immense value. But for me, there was a question about my ability, and my family's, to cope. Our discussions revolved entirely around our shortcomings and potential failings, and the impact on DS1, particularly of a child that would probably have a very short life.

That's why I think it's so important not to equate 'X terminated a pregnancy because of DS' with 'X thinks I should have terminated my pregnant due to DS', because there is a huge gulf between those two statements.

DH and I never decided what we'd do if the NIPT had come back positive for DS. I do know I have immense respect and admiration for those who have chosen to continue pregnancies in those or similar circumstances, simply because I doubt my own ability to do so.

anothernumberone how is expressing my own opinion trying to shut down a debate? Surely my thoughts and feelings are as valid as anyone else's on this thread.

'Pro choice with caveats' suggests that at a certain point in a pregnancy the right of the fetus overrides the right of the women to have absolute control over her own body and I absolutely do not believe that is right. Imposing caveats is not really pro choice at all.

For the record I didn't have tests for Down's syndrome etc because I wouldn't have terminated but I would never ever suggest that any women was in the wrong if she made different choices to me.

P.s. Thankyou to those who sent kind words :) xxx

That is not fair - we are talking about a test and potential abortion much earlier than any genuine pro-choice advocate

carol you have missed my point. The accusations have come out that no one can put a caveat on being pro choice. I am arguing that the vast majority of people put at the very minimum a time caveat on being pro choice so it is acceptable to say I am pro choice but because the vast majority of people do that.

I have made other points on the DS aspects above.

I read about this test a few weeks ago and can understand your apprehension of what it will lead to. My first DC was born when I was 22, my last when I was 36 but I did not have testing with any of my babies. My view has always been that I would not terminate a pregnancy whatever the result so it was pointless, this was shared by DH.

I can understand the view that being forewarned would have helped prepare us for any disability but from what I have read over the years, about babies with Down Syndrome in particular, is that there is very little information or support offered even after diagnosis.

Testing for disability with a view to termination does not sit well with my pro-choice stance as many babies will have a wonderful life given the chance. We have friends who made the decision to TFMR when their baby girl was given an 'incompatible with life' diagnosis - however the mum was 7 months into her pregnancy by then and it was horrific - but this diagnosis could not have been made early on. However, I am pro-choice and have to acknowledge a mum's right to have the testing, the obvious benefit of this test being that it's less invasive and no risk of miscarriage.

And testing is not a guarantee of a perfectly healthy baby - our fourth baby died at 37 weeks despite being perfectly healthy, the placenta failed and starved him without us knowing - the only testing which could have saved him was a scan later in pregnancy, but that wasn't on offer and is still not in most areas.

Thank you for sharing your story of your beautiful daughter Natty, I share your wish for better support and informed medical staff to help parents with any decision they make.

I entirely agree with BadlyBehavedShopping.

It appears to be routine for nuchal screening to be offered in my NHS trust regardless of age. I had it earlier this year at 26. If that had been a bad result, we'd have had an amino, if DS had been confirmed we would have terminated. As we would have done for any detectable life limiting condition.

I can understand your point of view but I don't agree with it.

I have a seven week old daughter with T18, we chose to continue with the pregnancy despite the diagnosis but prenatal diagnosis gave us choices and options, it enabled DD to get the treatment she needed to survive, I recently read a story of postnatally diagnosed child with t18 with a very similar presentation to Dd who was told treatment was not possible and didn't know differently and died aged 3 weeks, what they would have done with an antenatal diagnosis who knows but at least they'd have had a choice.

In a future pregnancy I'd have NIFT not to terminate but to plan. I don't think NIFT will increase the termination rate for trisomy 21, 18 or 13, significantly . What is important though is honest, unbiased counselling from medical professionals so parents can make informed choices.

If this test was available in Ireland I would be queueing up for it, and terminating if disabilities did show up. Sorry.

I grew up with an autistic sibling, currently he is physically dangerous, not doing anything with his life and deeply unhappy. Growing up with his meltdowns, abuse and aggression had terrible effects on my mental health and that of the others in my family.

I know a lot of families with children who have disabilities, many have the same problems. I do not want this for my kids and myself. I love my brother, but I would take away his asd in a heartbeat - so would he.

behavedbadly Emotionally I agree with your position on late abortion on gender grounds, but logically I cannot - if you are pro-choice then a woman can decide at any point for any reason.
I would not want anyone like that in my social circle, but a woman who makes a decision like that would not be a good mother to that child, so maybe the abortion is in the best interest of the child.

The decision to terminate on the grounds of disability should be up to the pregnant woman. Any state interference with the woman's right to choose is wrong - I do think even the current legislation, which requires the consent of two doctors, could be improved, given than abortion pills can be obtained online. Ultimately, it is the mother, and potentially father, who will bear the daily responsibility of caring for that child. It is not the state, nor anti-choice people that will have to deal with extra challenges related to having a child with disability. I know whereof I speak - I have a disabled child (it is not DS), but I think people should be able to test for disabilities and terminate if they wish to do so. Ideally, every child should be wanted and no woman should be forced to carry an unwanted one to term, no matter what her reasons for choosing abortion are. Women are perfectly capable to make that decision and countries that deny women their reproductive rights don't do it out of love for foetuses and disabled people - they do it to control women, and to deny them sovereignty over their bodies.

Since the advent of ante-natal testing, the number of babies born with Downs Syndrome has decreased dramatically. That's a fact. We all know that. This means that the number of children with Downs Syndrome that we all know has fallen and the number of adults with Downs Syndrome that we know will also fall year on year. That population is getting smaller. At the same time though life expectancy is growing and expectations for the life that people with Downs Syndrome will live are growing too.

Recently we got some new neighbours. Two have autism and one has Downs Syndrome. He is now living the life any 20 something should be living - independent with his mates, albeit with more support from families and carers than a NT 20 something has.

So with all that 'good news' why is the number of pregnancies that are continued after a diagnosis so small? Surely it has to be because of the picture of the condition that is given to expectant parents and because of their own level of knowledge?

I'm not planning any more dc and wouldn't have screening for Downs if I was (though I would have cardiac screening due to a cardiac defect in one of my other dc) but if I was pregnant and if I did receive this news I would be in a position to use what I have experienced and seen to make a decision. I think what the Op is getting at is, because of the number of pregnancies terminated, we are making it less and less likely than parents will be armed with knowledge of that population and so that makes it more and more likely that more will terminate and so it goes on.

I am pro choice. If you want to end a pregnancy then you don't have to give me a reason that I judge morally acceptable. That's abhorrent to me. If you want to end a pregnancy then that's your choice to make. But nobody should be making that decision because they don't have all the facts or are given an inaccurate picture. Nobody should be ending a pregnancy because everybody else does. Equally nobody should continue a pregnancy because somebody else decides they should. We've got to find a balance between giving parents all the facts and also reflecting on what parenting is all about. It's not a ticket for an uncomplicated life. Any pregnancy changes us, changes our lives. Any parent choosing to have testing should do so knowing that all that will do is give them a bit more info about the nature of the change they are undergoing.

I am a realist I do not believe that every family wants to or even is in the position to cope with the demands of a disabled child.

However I do think there is a trace of eugenics to all of the arguments put forward. It is strongly suspected that some of the greatest geniuses who ever lived had ASD for example. Stephen Hawkins has lived years as a much contributing as a disabled person. Silicon Valley is full of people with ASD thriving in the tech industry. The notion of riding the world of disability, maybe because I am the mother of 2 children with additional needs, does not sit as well with me as behaved badly makes it sound.

Posted too soon. I have the same views of DS because I know far too many good examples of people living with the conditions to say wouldn't the world be a better place if no one like then existed.

I am pro choice without caveats. There is no wrong reason for a termination. Every baby deserves to be wanted 100% by both its parents at the very least.
In the mean time this has been a sensitive and diplomatic discussion

Pp saying "I do not want " "I couldn't ".. "but you might have to. Even after all tests. ..deal with disability. Disease. Etc. So then what ? Give up for adoption ?

I know a woman is entitled to terminate for any reason without having to justify it carol but it disappoints me - actually no, it disgusts me that anyone would do it for such entirely selfish reasons as gender selection.

Just because I support her right to terminate for whatever reason she sees fit, doesn't mean I have to like the reason.

If you abort because you really don't want to be a mother or do not feel you can be a good enough mother/provider at that point in your life that's one thing. If you want to be a mother but don't feel able to cope with a disabled baby or don't want the baby to live a difficult and compromised life, that's another thing.

But wanting to be a mother to a specific gender of baby only, and being prepared to keep conceiving and having repeated late terminations of healthy uncompromised babies until you get what you want is immoral and despicable.

cestlavielife

Well after giving birth, that's not making a choice is it, that's just getting on with life.

cestlavie you have a great name for making that argument.