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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

The NIPT is a big improvement on current testing and should be offered on the NHS imho

CVS/Amnio testing carries a risk of miscarriage and is done later in pg
Early testing gives women more time to consider their choices and can avoid later terminations

Agree with pp - non judgemental support for women making the decision would be my priority.
I inherited my values from my mum on this - a teacher mostly in a school for severely disabled christen. A job she loved and children she cherished but she always said she had seen too muc and that she could not with a clear concious, bring a child in to the world already compromised. And it is a life compromised from the outset.

I apologise for using the word genocide - I hadn't appreciated how it would be read.

However, it's hard not to read "disabled people should not have been born" from remarks about tfmr where those medical reasons don't add up to an incompatibility with life. You can be vehemently pro choice and support every woman who has a termination whilst at the same time wondering what the wider implications are of genetic screening. I think the comparison with gender screening is a stretch but it's certainly part of the same conversation.

I see huge cultural differences to DS in Ireland and the U.K. Here, in Ireland, a diagnosis is bad news, parents are concerned about outcomes etc but there is a wealth of knowledge and celebrated Down Syndrome lives a plenty.

I think for me personally one of my proudest moments ever of being Irish was when we hosted the Special Olympics. Up until then they had only been hosted in the USA. I appreciate they are not just for people with DS but s lot of participants have it. The whole country stood still watching on as people celebrated their achievements. Every major town in the county was host to another country. The townspeople took in the athletes and every town had flags, banners, buntings you name it hanging for the participating athletes from the country they were supporting. The entire city of Dublin was covered in Irish flags, hanging from regular homes, for the Irish athletes and a 90,000 seater stadium was filled twice for the opening and closing ceremony. The special olympics had never seen anything like it before. It was a truely marvellous occasion of sport and celebration.

I do not at all support Ireland's ban on abortion but not having a culture of abortion when DS is detected has been the only positive outcome I have seen for that position. Of course some women do abort here but there are many more babies born with DS here.

well, if early testing means earlier terminations, then IMO the law on the termination of disabled babies needs to be brought in line with termination of non disabled ones. Currently one of the justifications given for termination of disabled babies to term is that many disabilities aren't picked up until the twenty week scan. I'm still not entirely sure why that then means that the disabled baby can be terminated after 24 weeks, but apparently it does. But if conditions can now be picked up before the twelve week mark then there is no justification for the termination of disabled babies to term.

One of the issues with termination for disability is the fact that the disabled baby already is considered second class even before it's born, with the law being in favour of that pregnancy being able to be terminated even once the foetus is viable. Something which the majority of society would not support in a pregnancy where the baby did not have a diagnosed disability.

badlybehaved your post is full of assumptions and an overriding belief that a disabled child is somehow "less" than an able one.

No it isn't. it really isn't. 'Less' is the wrong word, totally. But disabilities are called disabilities for a reason. No-one wants them, and no pregnant woman ever wishes any sort of disability on their child compared to the alternative.

Faced with upsetting news, if you choose to go ahead knowing your child will be born with a disability that is your perogative but let's not pretend that they are going to come into this world being 'exactly the same' as all their NT, healthy, non-disabled peers. The disability doesn't make them 'less' but it does make them different, and challenged in ways that you would never have wished for them, had you had the choice. To say otherwise is just untrue.

it's hard not to read "disabled people should not have been born" from remarks about tfmr where those medical reasons don't add up to an incompatibility with life.

But like i said in my first post, women don't have to justify their reasons for terminating a healthy non-disabled child, so why does it matter if some women arrive at the conclusion that their disabled foetus should not be born? Lots and lots of babies don't get born, for flimsier reasons than that with no judgement!

And besides, compatibility with life is not the only issue to consider here.

I agree, Toffee. I have a son with ASD, age 7, and one who died of cancer after being born NT at the age of 9 3 years ago.

If I could take his ASD away, I would. The increased risk of disability is the reason why we chose not to have any more children after DS was born. It's not just about the child who has the disability, but everyone else in the family, too.

As someone who has tfmr I think this article is actually quite unfair.

Firstly though I would like to say I admire your honesty and you are very brave to write so openly.

However for my point of view is just like to address the reasons why I chose to end my very much wanted pregnancy with my son Albie.

Albie was never diagnosed with a specific condition. We found out at our 12w scan he had an increased NT level, it was suggested he may have DS. We had a CVS test the next day. Between getting the results I researched and researched everything I could possibly find about DS, including the many other life limiting problems that often go with the diagnosis. I joined forums and spoke to parents and tried to understand. As it turned out Albie didn't have DS, or any of the other 90+ conditions that had been tested for. It wasn't until our 20w scan we found out the anomalies our son did have. If we had chosen to carry on with the pregnancy it was more than likely I would have lost him before term, even if we got to term there's no way he would have survived with the type of anomalies he had.

our reasons for ending our pregnancy at 21 weeks was not selfish. We have a 4 year old daughter who it would have affected a million times more had we carried on. Could we risk our son being in any kind of pain?

I realise that this post is specifically about DS but these tests test for a lot of things and I got the impression from this post that you think termination is the easy way out?

It's not. It's so f***g hard. I buried my son when I'd only just met him. I ache for him every day. But I will never ever regret what we had to decide. We did what we thought was best and we still believe it was.

So please don't put down those people who chose to terminate. Don't judge them for doing what they think is best for their family.
Do they judge you for choosing what was best for your family?

I thought the OP wrote her feelings beautifully, I can clearly understand her point of view.
I disagree though, I'm in favour of having the option to have the NIPT.
When pregnant I had the option of having the triple screen test but chose not to. I valued having the choice.

True, Claire. I had nuchal screening with DS. I chose to have it, but told them I would not have amnio or terminate. But I think everyone should have the choice. As it is, DS's ASD could not have been picked up on any screening. Well, yes, there are no guarantees.

But I think it's a strawman argument to assert, well, if your child was born healthy and then got sick you'd just have to deal, so you shouldn't have antenatal testing and screening.

As the mother of a child who has a disability that can only be picked up after birth, and the mother of a child who developed a horrible disease after being healthy and died, I can assure you that is an entirely different kettle of fish and it's rather insulting to tell people they shouldn't be allowed to have testing that allows them to make antenatal choices but put up and shut up because 'nothing in life is guaranteed'.

And again, if I could take his ASD, if I could have taken her cancer away, I would have.

Alys - your post made me cry. What you wrote about not being able to risk the child being any kind of pain really resonates with me. Thank you for sharing your story x

NIPT tests still won't diagnose every issue or condition. I personally would have had the test if I could afford to but because I like to be prepared, not because I - personally - would terminate. Antenatal testing won't diagnose everything and all parents need to be aware that there child may still have something "wrong". It's naive to go into pregnancy without considering this possibility - 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?

I accept that this is my opinion however and still respect the choices of others.

i don't judge people. But i feel sad knowing that people (and maybe even me) might have thought it best to abort my DD had her disabilities been evident before birth, when she is the happiest most rewarding child ever and I or they could be missing out. I think people need to understand fully about disabilities before making the decision.

Thank you for this Hayley, I find the idea that woman abort for DS heartbreaking.

first the new test is good because it is non invasive and for example my neighbor would have gone on to have her baby and not lost it at 22 weeks due to the amnio... dont fight against the test.

some people will "only want a healthy child" and will do all tests etc - but they may still end up with a disabled child. that is life. you cannot screen out every disability.

perpetuating the myth that screening in pregnancy for DS means you are guaranteed a baby with no disability or illness is wrong and incorrect.

In the end I could only make a decision on what I knew. It came down to this. Which family would I choose for my 2 yo DS. One that has a child with downs syndrome and makes the best life they can or one that terminates the pregnancy for the good of the family. Both unbelievably tough and brave choices.

I'm sorry but you're either pro choice or you're not. You can't say I'm pro choice but.......because then you're really not pro choice at all.

There is a huge difference between having a child with a disability and loving that child and being a fabulous parent, and actively choosing not to proceed with a pregnancy where a disability is an established fact.

I am the sister to a man with a disability. Would I wish it away - yes, a thousand times, I would. It has been a deadweight around my neck since I was a little girl.

It is no ones fault and I don't resent him. But I would not choose this. If I was able to choose I would choose not to parent a child with a disability but also recognising I may not have a choice.

Expat For me it's about the importance of choice. I chose not to have the triple screen test and chose to have ultrasound scans. Even though I didn't want the triple, I'd fight for the right for each woman to make her own choice. No two situations are the same, who are we to judge?

Ayls thank you. You have put my feelings in a much more articulate way.
Tfmr are not an easy way out, we don't do it because we are selfish and want a 'perfect' child, we do it because it is what is best for our child (ironically)

I have battled with the feeling that I am not allowed to grieve from my dd2 in the way many would as I chose to end her life. However, I know I did it for the right reasons.

pepper that view is used widely to shut down debate on abortion. I am happy to be pro choice with caveats and the vast majority of people do not agree with your perspective and want time limits put on abortion of healthy foetuses.

I have recently had a NIPT, as the NHS screening put my baby as "high risk" for Down's Syndrome (1.1%). My husband and I dismissed the offered amniocentesis on the NHS because we considered the 1% risk of miscarriage too high. We wanted a better idea of whether or not the baby had Down's, because we are both of the "forewarned is forearmed" persuasion, and therefore wanted to gather as much info as we could on Down's, if it turned out that it was a real likelihood.

Termination of my pregnancy was never an option, regardless of the result. I am pro-choice, but would not want an abortion myself - largely because I have fertility problems. DD took over three years and IVF to conceive, so my current natural surprise pregnancy is too much of a miracle to end with the assumption that another would be a possibility.

The NIPT gave us a

My dd(5) has DS. We had the nuchal screening but refused amino as the risk of miscarriage was greater than the "risk" of Down's. I believe the "high risk" probability has changed so the risk is lower. Part of the reason for not pursuing an amnio/termination was the thought of such a late termination, I didn't feel I could go through with it.

If I had had the earlier choice, who knows? I feel it is very much a personal choice. I love my dd very much, and I, too, did lots of research into DS and felt I couldn't terminate. I wouldn't judge someone for making a different choice. Obviously, life would be easier for all of us if she didn't have DS, life with a disabled child is not for the faint-hearted. But she does and is very precious to us as she is.