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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

"Aspergers causes just as much anxiety."

Not necessarily. There are many people with Asperger's Syndrome who have little to no anxiety.

"It isn't "mild autism'".

Yes, because it isn't exactly the same thing as autism. It can be quite 'mild' - people with AS can learn to manage their relation to the world to the extent that it would not be easily perceptible from the outside.

Well my child has severe autism, as I said, and has little anxiety.

So my point still stands.

Is being "perceptible from the outside" the main criteria for eradacting autism then?

I'm finding the implication that you wouldn't cull people with Aspergers as they could hide it and pass for NT quite offensive.

So am going to go out and do something more fun.

Bear in mind that my child smiles from morning until night and has severe autism. Not quite a harder life. Not so clear cut.

Ds2 has hfa. He is incredibly bright and yes could 'pass as normal/nt' but suffers hugely due to his aspergers. Part of the reason it took so long to get a diagnosis was because he is bright and capable and lots of his issues were put down to being immature, summer born boy etc. It took him falling apart on transition to high school and even then it's a bloody huge fight.

He absolutely would be seen as being a mild case but yes he suffers, yes he struggles. But I wouldn't not have him, he is amazing and loving and giving and a brilliant young teen.

Do people with children with disabilities want to talk to people without and aid understanding? It often seems not on threads like this - that if we use one word in a way that one person thinks is wrong we are wrong. Surely what you want is discussion and understanding.

The wiki entry is a reasonable summary. I certainly subscribe to the view if I had a choice I would not have a child who was autistic although I know that like the deaf community there are some who think it is difference as good or superior to other ways of being.

"Social development

Social deficits distinguish autism and the related autism spectrum disorders (ASD; see Classification) from other developmental disorders.[23] People with autism have social impairments and often lack the intuition about others that many people take for granted. Noted autistic Temple Grandin described her inability to understand the social communication of neurotypicals, or people with normal neural development, as leaving her feeling "like an anthropologist on Mars".[26]

Unusual social development becomes apparent early in childhood. Autistic infants show less attention to social stimuli, smile and look at others less often, and respond less to their own name. Autistic toddlers differ more strikingly from social norms; for example, they have less eye contact and turn-taking, and do not have the ability to use simple movements to express themselves, such as pointing at things.[27] Three- to five-year-old children with autism are less likely to exhibit social understanding, approach others spontaneously, imitate and respond to emotions, communicate nonverbally, and take turns with others. However, they do form attachments to their primary caregivers.[28] Most childen with autism display moderately less attachment security than neurotypical children, although this difference disappears in children with higher mental development or less severe ASD.[29] Older children and adults with ASD perform worse on tests of face and emotion recognition[30] although this may be partly due to a lower ability to defines a person's own emotions.[31]

Children with high-functioning autism suffer from more intense and frequent loneliness compared to non-autistic peers, despite the common belief that children with autism prefer to be alone. Making and maintaining friendships often proves to be difficult for those with autism. For them, the quality of friendships, not the number of friends, predicts how lonely they feel. Functional friendships, such as those resulting in invitations to parties, may affect the quality of life more deeply.[32]

There are many anecdotal reports, but few systematic studies, of aggression and violence in individuals with ASD. The limited data suggest that, in children with intellectual disability, autism is associated with aggression, destruction of property, and tantrums.[33]"

To me the wiki entry is unnecessarily gloomy.

I always am happy to aid understanding but to be honest can't be bothered when people claim to know better even when people who are living it tell them their true experiences. Don't have the time or energy.

Some of us have not said what we live with so no one knows what we know from personal experience.

I suspect not.

DS is usually perceptible from the outside! In fact, it means people are often accepting of dd's behaviour etc. but it is a double-edged sword in that people also have pre-conceived ideas about DS too.

Re: ASD DS has hasa 40% chance of ASD too, though I believe it can present differently.

Fanjo I felt the same about the limited info from the NHS for DS when we looked at testing. It listed every possible medical problem, not many dcs have that!

"I'm finding the implication that you wouldn't cull people with Aspergers as they could hide it and pass for NT quite offensive

I made no suggestion of the sort. Just gave it as an example of how mild AS can be - so mild that it can be imperceptible from the outside.

I dare say that you would get offended far less often if you did not go out of your way to read meanings into others' posts that are not there.

"there are lots of people who wouldn't choose to have a child with ginger hair (if you can believe the threads on MN). Do you think that's OK?"

Surely you are not equating a purely cosmetic trait such as hair color to a permanent condition that severely limits intelligence, independence, and life expectancy.

I wholeheartedly support every right of people with genetic disorders and permanent disabilities but can't understand why we would promote more people being born with them if we can possibly avoid it.

Yes, a massive gulf on the thread but I hope we're trying to understand each other.

I would be more than happy with a child with any colour hair or no hair at all but not one with autism or down's and I think if we could help ensure those parents who don't want children who are autistic or have down's that would be good. Others obviously take a different view.

Cote. Please don't insult me.

You said make no mistake you were just taking about severe autism not Aspergers.

Your implication was clear.

Deo I don't need to try. I understand you very well

Do people with children with disabilities want to talk to people without and aid understanding? It often seems not on threads like this - that if we use one word in a way that one person thinks is wrong we are wrong. Surely what you want is discussion and understanding.

I'm quite happy to talk to people regarding my daughter and she will talk to you yourself if you so wish :o but no, my aim in life isn't to enter into discussions about our private family life or her disability, mainly because she is so vulnerable. Asking a parent of a child who has learning disabilities whether they would take that away, is akin to me asking you whether you'd swap your daughter for a son (or vice versa) !

Would I take her epilepsy away? Yes without a second thought. Her physical disabilities? Yes without a second thought. Her learning disability? I'm not so sure. It's the whole essence of who she is. I really cannot and will not imagine her 'normal'. She really has a unique personality and of course some of that is to do with her LD.She won't be rich or beautiful*, But she'll be walking your streets, In the clothes that she went out and chose for herself.

• I think she's beautiful, but these threads always remind me of that record