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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

Dixie, special schools are (in my experience) lovely. My daughter has been to three and its been the most suitable environment for her. She mixes with her peers at school, to suggest she doesn't, is viewing those with special needs as an inferior peer!

Back, to the original discussion, everyone needs to be comfortable with the decisions they make in life, the decisions they can control. There are lots in this life we have no control over at all. I think it'd bound to get people's hackles up when a judgement from a stranger is made on their lives, either way.

People with learning disabilities aren't a sub species, they are human beings like all of us on this thread. I don't like to say this but I think it does society good if we are all a bit more open minded about things.

Hope the hospital appointment goes ok Lego.

I agree that you don't have to have experienced having your own child with disabilities to inform your future choices but some personal experience on some level. I'm not sure that, of all the 92% of babies with Down syndrome who are aborted, parents are armed with this, to counterbalance their own fears.

Living with disability is wearing. It is hard. Sometimes it is heartbreaking. But so are lots of things in life. Personally, and it is a personal view, I worry for the future of a society where we think we can eradicate imperfection, which I see this issue as being part of.

the answer isn't to stop access to testing but to make sure the information on a particular disability/condition is accurate. informed choice. remove fear. stop cuts to services.

Spot on

Dixie - my severely auristic son's special school has been a wonderful experience for him. I love his school in a way I do not love the schools his NT brothers go to. We were pushed into mainstream initially - he lasted 4 terms (& only managed that because he did 2 hours a day in reception). He's 16 now - has had a very difficult year but school have stepped up, put in place what he needed & it's (touch wood) going well again.

Social care unfortunately is a joke. Am just rolling up sleeves to go into battle with them again. But special school has been fab - don't let anyone make you doubt yourself!

My son's special school is awesome too. It really is a fantastic place and DS is thriving there. I wish I could say the same about my DD's mainstream school.

The education of children with additional needs has been seriously compromised by cuts. David Cameron said he would not close special schools but he had starved them of funds so much that they cannot function. LEAs being difficult about transport makes it harder for children in special schools. Mainstream is no picnic either as there is not enough money to support these kids. Benefits, adult social care and respite has also been cut.

Is it no wonder some people find it all too much.

In a nutshell, I'm pro informed choice but the danger is that many decisions are made using out dated information...
Does our son (or indeed either of his sister's ) look like they are in any way, shape or form "suffering from DS"?!!
This boy is the source of much light, joy and good humour in our family, we wouldn't be without him. We just ask for a kinder society.
I must say I'm always a little shocked (still) at the negative picture of DS painted by so many posters. I don't see it in my family and I don't see it in my friends, many of whom have children with DS.
Make a choice but please make an informed choice...

They look positively miserable perspective :o

What gorgeous children you have :)

Thank you Owllady!
Thank you too for your thoughtful posts. I read this yesterday and couldn't contribute as I was too cross. So many negatives and throwaway comments about T21 and disabilities in general.
Yes, make an informed choice but don't afterwards be insulting about other people's children with disabilities who are living amongst us all. My child isn't actually "disabled" at all by his T21, the older he gets, the more I realise pockets of society do this too him. Fortunately, our fabulous primary where my daughters attended, have been able to cater for his needs very well indeed. His school doesn't "disable" him either.
Please all keep in mind the Mumsnet campaign This is my Child...
I understand people consider termination of foetuses and no decisions are taken lightly but please also be considerate of our children with disabilities making their way through life. I'm afraid we need more than one nights consideration as you watch Children in Need!

Gorgeous happy children perspective!

I'd love for people facing difficult choices to see the many happy family photos of people living with disability. Because this is the reality as much as the hardships are. It is life, with all its quirks and imperfections that make us human.

Definitely, OrangeNoodle!!
We have had a few things to deal with related to our son but we've done the same for his sister's too. Children and adults with disabilities aren't part of "the other", they are part of the whole of society and can bring their own strengths and talents to us all.
I wonder if people are aware that there is a professional collection of artists who exhibit and sell commercially and they also have DS? heartandsold.org.uk
There are also several actors with DS working on television and in theatres. Don't dismiss these individual's lives as worthless or incompatible with life...
Sadly society is becoming fixated with "perfect", whatever that may be. Well, we risk missing out on many amazing people!

I struggle to understand why it is considered sexist to choose to abort a foetus because of their gender, but not disablist not choose to abort a foetus with DS.

Other conditions that leave a baby with severe life limiting problems and pain are not the same as people with DS.

Can I just say that in every post I have written on this thread I have not once said people with DS or anything else for that matter are worthless, or that they shouldn't be here. I have said that I think the families and the children themselves are brave and fantastic, but that I chose to end my pregnancy because that was best for MY family, just like carrying on with your pregnancy was best for YOUR family.

I also said that I did find out all I can about DS, I spoke to families with children that have DS and not all was bad. I also researched smyth lemli optz syndrome when it was suggested my BABY had that.
I never once said DS was incompatible with life I said that the condition my son had was...

I shouldn't be made to feel like a monster because I chose a different path to you.

You have not Alyselisaebth and I do defend your right to choose for your family and yourself. I have not called anyone a monster, I've just called for informed choice, I did write that quite clearly. Some people on this thread have been very dismissive and negative about children and adults with disabilities and I felt I had to defend my family, my son, my decisions, just as you did yours. I really do wish you all the best...
Some posters do clearly think it's a good thing to eradicate "genetic disorders", I was merely showing how T21 can look in a real life family situation and not as a "result" on paper.

Who said it was sexist to abort a baby because of their gender. I said it was selfish, not sexist. I don't think the issue with gender selection is so much one of sexism but one of a sense of entitlement.

I don't think anyone has been throwaway Perspective. Some people have been negative about the effects of disability on their family but not about DS as a whole.

Choosing to abort a foetus with a known disability should be treated in the same way as choosing to abort any other foetus - as a personal choice made by the woman carrying that foetus and her family. No one else. It should not impact on choices that other people make. That's the whole point of choice, surely?

And besides, the difference in the two things there is that aborting a healthy baby with no obvious disability, life limiting condition or deformity is done purely for reasons of entitlement, it's totally all about the parents' wants and not remotely about the challenges and complexities surrounding that child's future needs or wellbeing.

I am surprised that people are dismissing the use of tests to preapre for life with a disabled child. My husband and I talked at length about this in both my pregnancies. We agreed we would have the tests, not because we would want to terminate for Down's or other conditions, but because we would want to know and prepare in advance for what was to come. I know other people for whom that was the case as well.

However, I wholeheartedly agree that such tests would be better given as part of a supportive and educational preparation for parenthood which encompassed education about parenting the disabled.

I really don't think you can prepare. I don't think you can be educated to care for a child with a disability either. As a parent carer your situation is often unique and you have to rely heavily on your instinct and then eventually, your experience.

I'm just thinking about preparing. My daughter recently had major surgery which she is still getting over. I was incredibly anxious beforehand, I saw a counsellor to take it through etc. I tried to prepare. I don't think it made any difference. The day came and went (11hr surgery) the hospital stay came and went, we're now at home recuperating. I've talked alot about it all to my husband, but I don't think you can prepare. You can think you have prepared but often the reality is very different.

I don't want to sound scathing to anyone but I do think its a bit patronising to portray you understand the reality, the implications of having a child with a disability but the reality is you can't learn that from a book or looking in from the outside. You only really know the reality if you are living it, but that's true of lots of things.

Also, slightly off track but in relation to my first post about support structures, government cuts etc. Someone mentioned disengaged paid carers. As you'd imagine, I do have carers outside of school involved in my child's care as part of a social care budget. Atm alot of my daughter's care is provided by me is provided by an agency which gets £15 ph plus expenses, I believe, to provide a carer. The carers they provide are on zero hour contracts or are relief staff, all on minimum wage. They are having to use their own cars. Some weeks they'll have loads of hours, sometimes none. Care is SO important to all of us. It's imperative at some stage we will all need care ourselves, it's something that affects everyone. Yet the working conditions for paid carers is extremely poor and even looking from the outside in, I don't know how they manage to earn enough to live, so I could or would imagine disengagement, although wrong, is common and maybe we need to consider why their working conditions are so poor. We are going down a very slippery road if we think it's acceptable to make profit from other care sector.
Sorry I know this is off subject, but it has sort of been glossed over on this thread without any deeper discussion.

Well, I have for one have not suggested that I 'understand the reality' or would have done with education and/or preparation.

We would, I think, have welcomed the opportunity to tell family and friends in advance, to think about how best to manage financially with a child with additional needs, and other practical things.

I welcome these tests for those who would use them to prepare and make informed choices for their families. The current tests carry risks are performed later so this is an improvement.

But, personally, like some previous posters I opted out of DS screening during my pregnancy - there was no question of terminating for me. So, based on purely my own circumstances I would not have been using the test to prepare - I never looked at it that way.

Thing is, I didn't want to live with the reality of it. I'm sure there's great support in certain areas but ultimately it's the parent(s) who have to bear the brunt of it all. It just wasn't a sacrifice I was prepared to make.
I don't know what that makes me.

For me, the hard bit of hearing people talk about terminating because of disability is the message that gives families like ours that people who choose to terminate think the lives we lead are so unpalatable that it's worth ending a life for.

It's a tough message to hear.