Guest post: "I fear the eradication of Down's syndrome"

[MumsnetGuestPosts]

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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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 feel very sorry for you that you think it's a good thing a child..your sister..died..just because they had Downs syndrome.

And terminating for medical reasons is not regarding children as of lesser value. So I think perhaps it's only you who thinks they are of "lesser value".

The law does not allow termination at later stage because the child is of "lesser value".

So much wrong with your post.

I'm hiding this thread. It seems to be damn unpleasent to everyone whatever side of the debate your on.

Either you are genocidal nazi baby killers or deeply offensive and uncaring to anyone who has had to make the impossible decisions.

wannaBe was the one who rightly said the state presumably thinks disabled children are of lesser value because abotion is allowed up 40 weeks for those children . She said "surely this then gives disabled babies over the 24 week gestation lesser value to non disabled ones...."

That is English law. For those who think the reason is not lesser value why does English law allow abotion up to 10 weeks for disabled children but only much earlier for others? The other reason is that the child might be more likely to suffer.

I don't need people to feel sorry for me that I am glad my very disabled down's sister who had other problems too as I said died as a baby. I am content with my own views. Also those views are the same as the 94% of British parents who abort a down's child of those who take the test and that last caveat is important because plenty who would not want an abortion ever do not take the test and are not in that 94% statistic of course.

The law doesn't allow for later terminations to allow you to get rid of an inferior foetus. It's to take into account many factors such as pain as suffering to the child.

Good grief.

Pain AND suffering. Quality of life issues. Etc.

Not being "of lesser value".

Late terminations are extremely rare in the UK. Statistics for reasons for late terminations are not published in the UK as they would almost certainly identify people. Many of the conditions are completely incompatible with life.

I thought late terminations for medical reasons were due to amnio/cvs/anomaly scans late in pregnancy, and to allow parents to make decisions following that information and counselling.

I have a dd with DS and I don't feel that others' choice to terminate means she is of lesser value. It is a personal and extremely difficult choice. It is also completely different to carrying a foetus which is incompatible with life.

No, there are certain conditions that can't be diagnosed until very late in the pregnancy, as really tired states. They are usually for extremely profound conditions.

I've been on mn for twelve years. I really think the poster above is better off ignored, I'm sorry if that offends people but she's been c&p (?) out the same posts on any thread like this since she joined. Nothing anyone says will ever resonate or make her change her mind on anything, so I'd consider that before investing any time to respond. Most people would rather not say anything at all, than to keep being deeply offensive to whole groups of people - which suggests some thing in itself, I suppose

Yes, as I said above there are very very few late abortions in the Uk so they aren't really a huge issue. As for why the law allows abortions of babies up to 40 weeks if they are disabled you would have to go back to the original debates in Parliament to find out. The motivation is irrelevant to the legality of the decision. As for why 94% of parents in the UK of babies disagnosed in utero with downs abort again we would have to ask them but most of those decisions are not late in pregnancy, they are earlier.

Coming from a country where there is no routine screening for genetic abnormalities like Down syndrome and where there is no legal abortion, so in effect no choice at all about your life as a parent, I think maybe come to Ireland where there are many more people, than in the uk, living with Down's syndrome in the population, and people with other chromosomal abnormalities too.

Fwiw, becoming extinct is a very bad way of putting the selective abortion of people with genetic abnormality problems like down syndrome.

In each case a genetic mutation is a mutation, it is not an inheritable condition, but rather a point of conception mutation. People with Down syndrome can have genetically normal babies, and people with normal genotypes so can have babies with abnormal genotypes, IE have Down's syndrome.

Having a family member with a genetic mutation like downs's syndrome can be detrimental to the family as a whole. Sometimes a statement like deo gratsias' can sound like schafenfreud but in reality it's truthful.

I'm sure if, everyday, you saw the hardship of Irish families with mostly older parents with, in effect disabled adult children, you wouldn't be so rosy eyed about not being able to chose to have tests, or to terminate a pregnancy.

Life with a disabled child gets harder and harder as time goes on, and added to this fact is that parents of people with Down's syndrome are usually older to start off, their life gets really miserable toward the end as carers for adult children who often can be very wilful and headstrong and physically very demanding for 80 year olds to manage.

I'm delighted the op has a good experience at the moment, was able to make a choice, and is able to manage her portable and docile child. I ask her to keep us posted when she's looking after a much bigger and stronger and less docile 40 year old when she's in her frail 80s. If you think I'm being harsh and mean with these words, think about it, because that's what her reality will be.

I'm all for choice, routine testing and the choice of terminations, but then I have experience of Down syndrome in my family. It's not a sun warmed picnic by any means, and gets worse as time goes on.

Underd, I am with you on that. However lovely my baby sister with down's was when my parents got old and died it would have got harder and harder,. I am not saying we would mnot have taken her in - of course I would but it is not easy. I have a friend with a very disbaled daughter. The friend is nearly 80 as is his wife. They worry a lot about their daughter.

I have my mother's diary from the 1960s when my sister was born. She was of course very very upset when she died as they have talked about doing a heart operation on her which was then not done. I don't know if they should have operated or not but they didn't. I don't know if my father, a doctor, was allowed in put into the decision whether to operate or not or whether she would have died anyway and of course I know that had she lived we would have loved her and she would in some ways have enhanced our lives with her love. My father was one of the first psychiatrists to ensure down's children were welcomed into the community and not shut away in the 1960s. It is not as if as a family we did not understand about these disabilities. However I think if a decision were made not to intervene to help save her that was a good decision the best one both for the parents and for us the remaining children. None of this is easy to think about or write about particularly for parents who are bringing up a child with disabilities. I admire them hugely I am not sure if I could so it although I suppose if presented with it most of us find the strength in us to do so.

What a bleak and wrong view of life with disability.

Some terrible burden rather than a person.

But that's the choice parents make. Those who would keep a down's child often don't have the test. Of those who have the test 94% abort. Those people might well have a bleak and wrong view but it is their view.

"The discussion is really surrounding if the choice is being made with good understanding and if the result is that no children with Downs Syndrome are born would that be a better world?"

Prehaps the question is whether the parents are in the right position to cope. A 14 year old single mother may have less support to cope with a child with downs than a middle class mother who is in a twenties. Its all very well suggesting the 14 year old put the child up for adoption, but its hard to find adoptive parents for a child with significant disablities.

In a world where mothers can abort on the NHS a healthy foetus for social reasons, why is it any worse to abort a disabled foetus before 12 weeks? A disabled foetus in the early stages of pregnancy is not anymore a human being than a healthy foetus of the same gestation.

Does allowing a 14 year old to abort a healthy foetus before 12 weeks make for a better world. Or does it just make that 14 year old's life better. Who are we to judge the hypothetical 14 year old or anyone else who has an abortion.

Yy, ReallyTired I would celebrate! We work so hard to help dd's ld, if a drug would help that would be great. I think they are working on drugs to help cognitive ability atm. Though not in utero, obviously.

I thought babies with DS were easily adopted, we know several families who have adopted more than one child with DS.

"What your drug would be doing is in effect the same as aborting and getting pregnant again, that is swapping the "defective" baby for a "perfect" baby. What OP and many other posters are saying is that these babies/children/adults are not outwith humanity, they are a valuable part of the whole."

I am sure that one day it will be possible to gives drugs in utero. Ethically it's not the same as having abortion and getting pregnant again. If Downs could be cured then there would be Benefit for that individual foetus. Abortion destroys an individual foetus and getting pregnant again does not replace that individual.

Certainly there is a fair number of people across the world who consider abortion to be murder. I may not agree, but accept their point of view.

Phenylketonuria used to be a major cause of learning difficulties in children whose bodies could not digest lactose in milk. The heel pick test picks up such children and they have a special diet. Most people don't think that the world has lost out in any way.

Treating Downs with drugs would make the world a happier place.