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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

Btw, I do think the mencap distinction is useful but difficulties is what is used here on educational documents.

We are in the process of looking at Complex Needs Schools, possibly for transfer from mainstream. They have definitely used the term difficulties. The front of dd's statement has loads of acronyms which have, for instance, SLD = Severe Learning Difficulties, MLD = Moderate Learning Difficulties, PLD = Profound Learning Difficulties. I agree that disabilities makes more sense. I can't speak for educational establishments elsewhere but they definitely use it here.

Even the word disability implies something negative. If you think being deaf is an advantage you might choose rather than having the difference of hearing then the word disability to describe it is full of negative connotations.

"dis a Latin prefix meaning “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force (see de-, un-2.); used freely, especially with these latter senses, as an English formative:
disability; disaffirm; disbar; disbelief; discontent; dishearten; dislike; disown."

The blog post is really interesting and people, the whole of society needs to think about it. Over 30 years ago when I was pregnant with my first child I took folic acid tablets to reduce the risk of spina bifida. I am not sure how rates of that have changed but if we think the "dis"ability is not really such, just difference which can be as good as or better than those without that characteristic then taking measures like that is similar to aborting disabled babies. Then move to smoking. My mother smoked during the pregnancies of my younger siblings (who went to Oxbridge by the way and were heavier at birth than I was) and obviously had she been able to stop she would have done even then but if we think different children are just as good, even better why do we take measures to reduce risks of that kind? Or is the debate just about whether abortion is right? Are we happy to ensure certain "problems" in a baby are never created but not happy that once it is conceived with a parent at that point aborting?

How strange that I posted that the word "problem" was offensive then you suddenly use it there. Hmm

There is no back story to my posts, as I said earlier I don't use the special needs section and rarely post on sn threads.

Quirky, my daughter at sixteen is still sometimes refered to as having a developmental delay, rather than a severe learning disability. It's a really lazy umbrella term and doesn't explain what all the complex disabilities are. I've found that using the correct terminology, especially on paperwork, makes it explicit what the level of those needs are iykwim. Unfortunately I do have the 'value' of experience where things have been wishy washy worded and therefore it's not an issue the clearer you 're on terminology and needs, the more straightforward dealing with it all is.

I've only ever responded to cote on this thread.
I think it's really important that those of us who are parent carers of children with severe, complex and profound disabilities are the voice for our children as they too vulnerable to do that themselves (this does not necessarily include down syndrome) As my daughter's advocate, I owe that to her.

Words are very important as is knowing what words people don't like. However the point about the use of "dis" is valid. It is very important we also all keep talking.

If people want to ensure down's does not die out then a way to help with that is parents with children who have down's syndrome to show how happy lives can be and secondly try to reduce the number of scans done and perhaps more guidance for parents facing the question of whether to abort or not.

I just like to debate topics. My teenager was talking about this issue yesterday.

I gave my view above - that if we can ensure fewer down's syndrome children are born that will please parents and not be a bad thing. That does not mean had my baby sister with down's survived we would not have loved her to bits of course.

There is no back story as far as I am aware, zzzz. I have "known" & respected jimjams for many years on here and sincerely don't believe that I have said anything disrespectful. I don't think I know the others. But what I am talking about in an objective manner is of course very personal to several people who have children with DS, and they feel attacked.

OP was about aborting a fetus for DS, which +90% of pregnant women apparently do. Some people on here see this as a judgement on their children who have DS, taking it as the society saying that their children should not live, or that they are not worth as much as other people. Which is not the case.

If you stop and think about this for a second, the only way that POV would make sense is if you believe that a baby/child/person is inside you from the moment of conception. And if so, you must be against all abortion, under any circumstances. Then your POV is consistent - it is a baby, a person, and therefore you shouldn't be allowed to murder it because of a disability, just like you would not be allowed to murder a child because it is disabled.

If you are OK with abortion in general, than means you understand that a fetus is not a person and it is hypocritical to argue against abortion for a genetic disorder that limits life expectancy and causes a very low IQ. If it is OK to abort any other fetus, what is so special about one with DS that it should not be aborted?

I think (personally) there is a difference between terminating because 'I don't want any child now' & terminating because 'I don't want THIS child'. I think it gets more complex again when talking about conditions that are not compatible with life versus conditions where suffering is pretty much guaranteed versus conditions such as DS or spina bifida where a very nice indeed may be in the offing.

"there is a difference between terminating because 'I don't want any child now' & terminating because 'I don't want THIS child'."

Of course there is a difference: the motive. But if you support a woman's right to abort for whatever reason, you should be OK with aborting for the reason of not wanting to bring to bring a child to the world who will always be dependent, who will have a short life quite possibly with serious health problems, and who will become an adult with the mental capacity of a child. It is a more solid reason imho than "I don't feel like being a parent just yet".

I don't see the fetus as a child at the 17 weeks or so when the amnio is done, so don't see the problem with aborting the 'seed' with the wrong coding in its DNA and starting again. If we were discussing an actual child, of course it would be wrong to kill him or her just because it does not have normal intelligence or physiology.

my child does not have DS, btw

"an unrealistically depressing picture was painted of what lower average IQ was like and generally what DS was like to live with."

I don't think anyone has passed judgement on what your DS is like. There is significant variation in the severity of various problems, and some have said how they get more difficult to manage as the child grows and the parents age. Certainly, the two families I know have struggled with this once their children with DS grew tall and strong. One is in her 40s now and can get very aggressive (sometimes for no obvious reason, possibly because she misunderstood something someone said). Her one remaining parent is frail and worries about what will happen to her when he is gone.

I would like to ask you a question, if that's OK: Why do you feel that Down Syndrome must not be eradicated? What is so good about it that you believe there should always be people with Down's Syndrome in the population?

I'm not suggesting tightening the law! As I said way back, being a pragmatic sort I support termination to birth for any reason. However, I think I am personally allowed to feel differently about it. Most of those reasons I could be a shoulder to cry on if necessary (have indeed accompanied a young friend to a termination), but I couldn't be that shoulder to cry on for termination for learning disabilities compatible with a potentially good life. Doesn't mean I think they've made the 'wrong' decision, or that it's any business of mine what decision they've made. I just couldn't provide the emotional support.

Mind you I think anyone asking that of me would be crass beyond belief, so hopefully will never end up in that situation.

OK, quick Google shows that zzzz is right, "learning disabilities" is used in health and social care and "learning difficulties" in education, but both terms are often used interchangeably. I think whichever term you use, including "developmental delay" needs to be quantified within a child/person's paperwork to be precise. Interestingly, the Down's Syndrome Association dislike the term "global developmental delay" as it is not precise enough. Hth.

I don't think there is any danger of DS being eradicated from the population.
It's idiopathic in origin, and is caused by a mutation of the genes.
Mostly it is associated with advanced maternal age, as egg quality has declined, though it can occur at any conception. Every conception has a chance of this mutation.

If you really want to live where there are a lot of people living with DS, come to Ireland. There are three out of 30 in my dcs class who have siblings with it, and I'm sure every family in Ireland has someone with it.

Living with the reality of those figures, I'm sure prenatal testing and legal abortion would be taken up more widely if they were available and legal. The reality of having someone with such a longterm and labour intensive disability isn't as attractive in practice I find.

Having said that, when living and working in the uk, I found living in a country which makes it difficult for people who are alternately-abled is not a pleasant experience. Of course we strive for perfection, but wholesale eugenics isn't the answer.

I find Ireland a lot more inclusive, tolerant and welcoming for all. The population isn't 100% perfect by any means, but it's a lot more human and accepting of all abilities because of that.

We tend to celebrate the differences iyswim, and there are a lot more supports available because the population needing help is larger. Still and all, I think most would opt for a healthier baby, without the DS mutation and the constant and exhausting worry that that entails.

But then we are all mutants in one way or another, arent we? I mean, we're designed to be- that's sexual reproduction for you.

I think DS trisomy 21 occurs both because of extra chromosomes in the egg or sperm, and due to an older mother more likely to retain a pregnancy with a chromosomal abnormality.

I think those parents who chose to adopt babies with DS do feel they are worth it, or they wouldn't chose to. I fidn't choose an amnio or to terminate because I felt I couldn't risk a very much wanted baby. We love her and enjoy her because she is our dd. That's not to say that she can't be hard work too!

Interesting what you say about Ireland, an Irish friend has a ds with DS over here and sees quite a difference.