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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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 wish I hadn't contributed to this tbh. I might get my post deleted it just gets lost in the judgement on the quality of mine and my daughter's life and that of her siblings. My daughter , luckily atm - I don't believe it's through hard work I think the vast majority of us with children with severely disabled children work hard - the outcome isn't always the same, but we shouldn't be looked on and pitied, our children's lives shouldn't be pitied either. What actually needs to happen is the support is there for those who need it, to make their quality of life easier, better and they are not judged on a Nero typical criteria, but one that is their life and their lives are worth celebrating, they are worth reaching their full potential, they're worth it. My daughter is worth it, so is everyone else's lives who has a severe disability. These young people, older people, with severe disabilities are still human beings, they all have their own personalities, they should be afforded the luxury of having lives made easier and happier by the rest of society.

Downs syndrome isn't always a severe disability either, fwiw.

If my post upsets people then I am sorry - but it reflects the reality of my situation and those of people I know. Obviously, I know people who've had a good experience raising a child with SEN. But I know many who haven't.

Being brought up with a verbally and physically abusive sibling did damage me. And it damaged my mother and father trying to cope with him. And of course, it's damaged him, and it hurts him to see others move on in their lives in ways he just can't. I make no apologies for not wanting that for my children, if I can help it.

Having said that - of course I don't think anyone is wrong to have a child with a disability. But it is not for me.

My daughter was diagnosed when she was two. No one helped us even cope, so I don't know what, if any, preparing goes on beforehand.

I know several people who have children who have an acquired brain injury, through really simple medical or accidental 'things'. Life can't be manufactured unfortunately

As the mother of both a neuro typical child and a child with severe disabilities, and as a woman who has previously terminated a pregnancy at 13 weeks because of serious anomalies associated with Down's Syndrome, I have, perhaps, a unique insight.

This is difficult for me to say but when I terminated my pregnancy, I did so because I was afraid of disability. I was desperately afraid of having a disabled child. I feared for what it would do to my daughter's life as a sibling, to my marriage and to my career. I was selfish. I wanted to eradicate imperfection from what was a pretty charmed life. I was devastated, of course, but also relieved when the termination was over.

Then I got pregnant again. Lots of detailed and expert prenatal testing. Everything looked 'normal'. But when DS was six weeks old we realised he wasn't developing. Four years later and we have a little boy who has what would typically be understood as very severe disabilities. He cannot stand or walk, he cannot talk, he cannot feed himself and he has life-threatening epilepsy. We do not know why. He has no diagnosis because whatever is causing his difficulties is so rare there is no test for it yet.

But you know what?

He has a fantastic life.

He loves wholeheartedly. He laughs big belly laughs. He watches sport with his dad and loves being read to by his sister. He is gentle. Kind. The sweetest of boys. A relentless flirt. He can't wait to get to school in the mornings and he greets each day with joy. There is a deep connection I see in his eyes that I have never experienced with another human. He is about as genuine as a human being can be. An all round stand up little guy.

And you know what else?

We all have a fantastic life.

Yes there are hardships. Yes there is heart ache. Yes my back aches from lifting him. Yes, there is endless paperwork. Yes I have spent far many more hours, days and weeks in hospitals and ambulances than I imagined I would as a parent. But DS has brought a wholeness to our family that wasn't there before. The challenges we have faced together, because of his disabilities, have changed us for the better.

We are kinder, more aware of the needs of others, and most fundamentally we now know that life is not perfect. We cannot eradicate difficulties from our lives and what kind of humans would we become if as a species we did achieve that? I don't know, but my gut tells me that removing difficulty and vulnerability from human existence could create monsters of us.

To be human is to be imperfect, and to be imperfect is to be human, after all.

I have ruminated over the decisions I made and the path life has taken us over the years. But there is one thing I know for sure. If I had my time again, I would not terminate that pregnancy.

I read these threads with a heavy heart and am almost thankful that these tests weren't around when I was pregnant.

Knowing then what I know now means that I'd make an active choice not to have my lovely child. And that obviously leads to feelings of melancholy.

I adore my child - who is, to be fair, NT in all senses. However my child has a degenerative medical condition. We've been in hospital countless times in my child's lifetime, with every year notching up more stays.

I've seen endless suffering from my child and I know that ultimately it will get much worse as my child gets older. The hospital is already our second home.

It doesn't just impact on my child, who is unfortunately very clued up on what's happening, but it's made our family life incredibly difficult and it does change the dynamic for siblings, who yearn for their mum, and who feel a myriad of feelings from jealously regarding the level of attention to guilt about having those feelings, and sadness that this bad thing is happening to a loved one.

My youngest child said recently that they were sad they had nothing for show and tell - we never do anything but hospital for my ill child.

It's not strictly true, we do have periods of being hospital free but we are currently in the midst of treatment and, because these courses are long, little minds can't remember the fun days from weeks ago.

I worship my children with every inch of my being, but I wouldn't wish this suffering on any family. Our lives revolve around a medical condition, and some of the odd things we do only serve to highlight the true difficulties of living with a disabled child.

I wouldn't want rid of my gorgeous child now that they are here - that would be beyond awful, and my heart would break.

But I totally understand why this isn't a life some people want. It's not the life I want either - for me or my child.

When it comes to the awful decision to terminate a pregnancy or not, the only questions to be asked of a woman are "do you have all the information you need" and "do you wish to continue this pregnancy". A woman's reasons are her own, and it is for no-one else to judge. I am only concerned with each woman having all the information she requires to make the best decision for her own life. The more information she has, the sounder her choice will be for her. Withholding information lest she make a decision unpalatable to another party is morally wrong. Judging her reasons is wrong. There is no "should continue her pregnancy because..." or "ought not to be allowed to terminate for this reason". We are not the moral arbiters of any other woman's decision on what to do with her own body. For this reason I also believe the practice of withholding information about the foetus' sex to prevent sex based abortion is morally wrong. (And I say this as a feminist who hates that females are considered lower value by many.) There is no "greater good" justification for withholding information about a woman's pregnancy from her in case she makes a decision about her own body, own life that you disagree with.

Either women are adults with full capacity to make decisions about their own bodies, or they cannot be trusted to make those decisions and must have their information limited in order to limit their choices, and their bodily autonomy.

Beautiful, lump in throat, hair standing on end post orange

You are the family I would choose for my children.

Thank you summer

'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.'

This! Thank you, Owl. I have had to fight and fight for my son, and still continue to do as I believe he has co-morbid ADHD. Fight and fight and fight, after all we've been through as a family.

Orange That is one of the most beautiful posts I have ever read.

So, basicallywhat I'm reading is parents opt to terminate pregnancies out of fear. Fear that they will not be able to provide what their child needs. Fear that their child may be a drain on their other children. Fear that their child will suffer, and they would rather bear the suffering for their child than give their child life.

All very understandable fears.
Especially with very few people with DS in our communities to show us otherwise.

Not for the first time on MN, I will post that there should be more support for families and people with SN, including DS. Because then parents would feel more able to continue with their pregnancy, and have more confidence in being able to provide for their child.

I too have a DS who has issues which could not have been detected before birth. If I had been told he was on the autistic spectrum when I was pregnant would I have terminated? Quite possibly, yes. Would I change him now. No I wouldn't. Because he wouldn't be him, he'd be someone else. I'd be more likely to wave a magic want over DD so she wasn't dyslexic.

This post saddens me.
I'm on one end of the spectrum. Like I said in a previous post I terminated a pregnancy at 21 weeks (not DS tho). Why do I feel I've been told I'm selfish? A monster? That what I did was wrong?!

My son, Albie, was wanted. I love him with everything I have. Ending the pregnancy was done out of love. Love for him, love for my 4 year old daughter, love for my family. It wasn't selfish and it doesn't make me a bad person.
I am a different person now. Kinder. I have more empathy and I value things more than ever.

But because that was my choice and what was best for my family that doesn't mean that I think people who carry on with the pregnancy are wrong. I think that was the best choice for their family and that they are fantastic for making that decision.

Don't put others down for the choice they made, and please don't make out its selfish or the easy way out.

Thank you CalmYo

I'm sorry if my post upset you Alys. It wasn't meant in judgement, just sharing my own personal experience and thoughts, perhaps clumsily

I think I can appreciate and love my dd with DS and understand why someone would terminate. As expat said it's no fucking picnic and the hardest thing about a child with a disability is the lack of support where it should be; fighting for basic services such as speech therapy or physio. If I had had an earlier, non-invasive test I might have made a different choice. The "risk" of DS we had would no longer be considered "high".

Disabled children aren't always really happy and full of joy. My DS is fucking miserable a lot of the time. He was referred to CAMHS at the age of 6 for suicidal ideation. He gets bullied at school. He doesn't get invited to parties or to join in with games.

Disability can be bloody miserable - not just for the families but for the child themselves.

Disability is, often, fucking miserable. Maybe that's what needs to change.

Is it the case that there are only relatively few disabilities that can be diagnosed at an early stage of pregnancy? And there are a few more that can be avoided through selective IVF?

That kind of singles DS and the other conditions out, because the technology is available.

if we had the ability to diagnose other disabilities in early pregnancy it seems likely that many women might want to have the information and would terminate pregnancies.

Well yes, Lonny. You can try and make people be kinder, you can re-establish the funding and support that's been stripped away by this government but you can't make my DS NT. And that's all he wants.

Reading through this thread it brings home the vast array of different experiences of parents and children with additional needs.

As a Mum of two, one with DS I would support every womans life to choose. The life we lead is a very good one but not one everyone would choose and not without it's own kinds of bumps in the road.

To be able to choose, women also need to be able to access accurate and upto date information that represents the full gamut of experience shown here.

What this thread also demonstrates is that so many of us have views still tainted by dated experiences and out dated information. DS has really moved on since we were kids.

Pre natal testing is just another reason that inspiring parents like Natty's mum, and those of us who share their experience of DS, need to continue proactively challenging perspectives and showing the world just how much people with DS can do, what contribution they can make to society and how valid their lives are.

We need to help women facing scary results to make informed choices by guiding and supporting them whatever they do. Not taking their choices away by campaigning against testing.

people with DS and other disabilities can do things, can contribute, can be valid, but, speaking from personal experience, it is bloody hard. On the families and on the person with disabilities. Mine is not one I would wish on my children if it could be avoided.

It shouldn't be hard for them to contribute.

It shouldn't be easier to be not alive than to contribute. Society is wrong here.

This is very close to me. I was born in 1965 with a condition known as proximal focal femoral deficiency. My right leg was much shorter and noticeably deformed. My leg was amputated when I was eleven to fit me for a prosthetic leg.

My life has been better than average in many ways. I have a Master's degree, three children, a stable marriage.

I went through hell growing up. The teasing, staring and torment I suffered was almost unbearable. Children can be vicious. Some of the comments I heard 40 years ago, ring in my ears to this day. Having a classmate tell Miss "We don't want the cripple on our team" tends to stay with you.

You think that people are better educated now and they seem to be, mostly. My young daughter and I were in Boots one day. We were walking out the door, an old man started laughing and said to her " Mind the a Crip" My daughter said " That's my Mum!" We waited until we got to our auto to burst into tears. My youngest daughter said to me " Mum, my friend said you wobble like a penguin"...

Please don't judge me, if I would choose not to subject a child to the hurt that I experienced for half a century. I know how disability feels. It is not an abstract issue for me.

I don't like the word contribute because it suggests we should talk about economic value, working lives, etc. All human lives have intrinsic value (& intrinsic costs).

My cousins' 30yo son with Downs finally had early Alzheimers confirmed (his mother has been dreading this since before he was 10yo). He also has fairly recent diagnosis of autism (that was heartbreaking). He never learned to read but has few physical issues, & a pretty good life & is still the Light of his Mother's life. She arranges his FT care. Losing him to dementia will be another slow heartbreak.

Seeing the burdens my cousin bears for her son cemented my decisions.