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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

Yes people with downs have an extra chromosome. Can't be removed with drugs.

But how do you think eradicating it would make society happier?

They are fascinating issues. Gene changes and gene therapy will be possible in due course. We need to decide what we think about these issues in advance as a society and ensure English law reflects this. Too often the law lags behind science. My view is that if parents can find a way to ensure their child is born without a disability most of them prefer to ensure that is so. That of course has nothing to do with loving and welcoming their children

When I had a DS test, I was very conflicted during the wait for the result. I had said before that I would definitely have an abortion - but at that stage I was very unsure. Of course had I given birth to a DS baby and previously been unaware we would have of course loved it.

But - given the choice whether to have a child facing difficulties in life or one with a blank slate at the beginning - well, that's obvious.

I once saw a programme where some deaf people were hoping their child-to-be would be deaf too. They were part of a group called, I think, Crips with Chips. To hope that your child is disadvantaged, well, that to me was beyond selfish.

"Only if the presence of Downs Syndrome in society is making "the world" a less happy place. Are you made unhappy by having people with Downs Syndrome in your society? If so, how odd."

Downs doesn't really affect me directly. It does affect my neighbour who is stressed that her baby might die before she is old enough to have a life saving operation. I believe she would be happier if her baby did not have a life threatening condition. I would feel happier if I knew that a lovely little baby was not at risk of dying.

"But how do you think eradicating it would make society happier?"

I think that eradicating the AFFECTS of Downs might make society happier. There is a significant element of suffering caused by a child having Downs. It is no fun for a child to have a hole in the heart.

"I should reiterate you can't "treat" someone with Downs Syndrome to remove the Downs Syndrome because to do so you would alter their genes and they would no longer be the same person. You would in effect have eradicated one and replaced it with another."

Yes, and know. With a abortion you completely snuff about the spark of life. The feotus is removed and destroyed. If gene therapy was possible then you would be changing the baby rather than destroying the baby. Many people might be more comfortable with altering the baby's genome rather than destroying (what they believe/ consider to be) a much wanted child.

Maybe you cannot remove the genetic material that makes someone have Down's syndrome at the moment. However we have no idea what is possible in the future. Even if you can not remove the genetic material it might one day be possible to give drugs that assist the brain development or help the heart to form property. More research is needed so there is better understanding of why an extra chromosone causes problems. Cancer used to be a guarenteed death sentence, but research has changed the out comes. Maybe research can do the same for disablities so that there is an alternative to abortions.

Ethics is a difficult issue. Doctors play God everyday by prescribing anti biotics. I agree that ethics struggles to keep up with science. However it is not ethical to allow children to suffer for years while philosophers witter on about the ethics of life enchancing treatment.

I thought my gentle descriptions above and analogies to what people do to girl babies in India were a pretty constructive part of the debate rather than an ignorant antagonism. The 2010 Act - yes I know - it prohibits disability discrimination after birth and is very helpful in situations like employment discrimination. What is the relevance of that to the issue of whether the current law which allows abortion for disability up to 40 weeks is wrong or right?

The issue for all parents is whether if they had a choice they would want their children without XYZ whether that be propensity to alcoholism, no legs or whatever else. So taking the legs example if I had a choice of a child with or without legs I'd go for the legs. If I could take something in pregnancy or allow an operation in pregnancy to ensure the legs were there I would go for it. I see the lack of legs as something that makes life worse for the child and the siblings of the child and its parents. That doesn't mean if a child of mine had no legs I'd hate it - of course not - we all love our children but that doesn't mean developments to ensure fewer children are born or even conceived with problems are wrong. I think they are a very good thing. My mother nearly took thalidomide. I am glad she didn't. I don't sit here saying what a shame I didn't get the chance to live that different but equal life without limbs.

Cochlear implants vary in the level of success, they can be life changing even if a cochlear implant does not give perfect hearing. Some children have learnt to speak English as a result of a cochlear implant. A person who was profoundly deaf before a cochlear implant might see being severely or moderately deaf as an improvement.

The Deaf community is made up of a lot if individuals with varying opinions. Saying that the Deaf community thinks something is like saying the people of London thinks something.

Eradicating pain and suffering is different to eradicating disablity. Sometimes disablity causes pain and suffering. Do you remember Christopher Reeve who played superman and became disabled after a horse riding accident. He wanted to be able to walk again. Maybe one day quadaplegics will be able to walk again. Is this a bad thing?

"
It isn't gentle to describe someone as not even equal. It is discriminatory and bloody ignorant."

Of course disabled people are equal. However the level of suffering people endure is not equal. Life is unfair even if we are all of equal worth in the eyes of the law or in front of God if you are religious.

People are not of equal worth to employers/ society as some people are more skilled/ talented than others. For example many premier league footballers earn more in a week than some people in earn in a year.

For my family 90% of the bad stuff about having disabled children is down to other people and attitudes to disability.

It's the fighting for education and for resources to give us as full time carers a few hours' break.
It's the constant being derided (both online and in rl) for being scroungers.
It's the people 'just nipping in' to disabled loos and parking bays.
It's the barging ahead for the lift that means we have to wait over and over.
It's the 'will not fold' bus mentality.
It's the attitude that our children are an 'inconvenience', an 'annoyance' a 'drain on society'.
It's those who just see label X and treat them a certain way even though they're individuals and solution Y doesn't actually work.
It's the staring and tutting and rude comments.

Ok the 10% - the hitting, screaming and the sheer crushing exhaustion is a factor but actually my kids are the best thing that ever happened. They are amazing, happy kids that light up our world.

There is positivity out there, the people that are considerate, those that give us a hand or a word of kindness at a much needed moment.

The conditions couldn't be tested for antenatally but even with the knowledge I have now I'd still have them. Because they still have a valuable place in society and in our hearts even if some people can't see it.

DS is caused by an extra chromosome in all the cells of the body (unless it is mosaicism), the extra chromosome affects different individuals in different ways. For instance, my dd does not have a heart or bowel defect but does have hypotonia (loose muscles). Perhaps gene therapy could "turn off" the extra chromosome in affected areas.

If she didn't have an extra chromosome she would still have the same inherited genes from dp and I, but would obviously be quite different.

Not all people with disabilities experience pain and suffering

Most people experience pain and suffering at some point in their lives whether they are disabled or not. Unfortunately disabled and their families people often have more than fair share of pain and suffering. Often the extra pain and suffering is caused by other factors other than disablity. For example ignorance, rejection, poverty or unfair discrimination.

The recent tory cuts have exasabated the suffering of hundreds and thousands of disabled people across the country.

well then the answer is not to end disability but to end the factors you mentioned.