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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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 that is interesting to hear as you have experience of both. Is the difference down to the severity of the impact? does the OCD seem more 'incidental' because it is less obvious, less full on all the time?

I wonder if the parents of children with mild autism find it to be more of an external thing to their children rather than an intrinsic part of them in the same way?

"Would you also be "unhappy" with a child with dyslexia? What about a child with eczema? Do you even realise how revolting these ideas are?"

Yes, dissatisfaction with a child you already have because they have a disability, difficulty, and especially a cosmetic blemish would indeed be revolting.

That is not what the thread is about, though. It is not about not wanting one's child because he has ginger hair, eczema, a missing finger, crooked teeth or whatever. It is about aborting an 18-week fetus (not a child, but the seed of a future baby) for a genetic mistake that limits intelligence, life expectancy, and independence. It is the decision not to invest another couple of months into making that baby and instead choosing to make one without such a serious genetic mistake.

I find this rational and don't see anything revolting about it.

(No doubt people will now be offended at "genetic mistake" but that is exactly what Down's Syndrome is - deteriorated genetic material causing an additional copy of 21st chromosome, which is a mistake in .)

"The conversation is about the selection of parts of the population to be eradicated and IF that is done in a truly informed way."

NO. It is not about eradicating "parts of the population". That would be rounding up people to be murdered. That is obviously wrong.

This is about aborting fetuses at about 18 weeks of gestation, before you even reach half-way with the pregnancy. If left uninterrupted, it would take another 22 weeks for the fetus to fully develop into a newborn baby and become "part of the population".

Cote is right. No one talking about harming those children already here.

And one of my children has mild dyslexia and of course I don't want her eradicated although I am sure as a child she would have preferred not to have it (she's now a City lawyer but that was harder for her than it woudl have been without the dyslexia so I see the dyslexia as a burden, not some kind of wonderful additional advantage).

Nobody but you is talking about aborting for a blemish or a mere difficulty.

I agree that humans change and evolve and have in one form or other for a million years +.

Doctors and most people in the UK are happy to advise women not to smoke when pregnant and to help couples who both carry genes which might result in certain kinds of babies to take measures to ensure they have a child who suffers less. I think these things are moral goods, not wicked evils.

If it were possible to ensure conception without mild dyslexia or to ensure the baby would not be genetically predisposed to breast cancer or depression then I would support that.

It's all become rather navel gazing hasn't it

"mistake is a poor choice of words as it implies people with DS are not the "correct" sort of people"

No, the phrase I used is genetic mistake. As in, a mistake (= error) made in the DNA during cell division (meiosis).

You will see the same reference to "errors" in NHS's Genetics Education website.

"Eugenics is what you are proposing."

I'm not proposing anything. Abortion of fetuses with chromosomal abnormalities is already happening.

And it's not happening for eugenics. Parents just don't want to bring to the world a baby with seriously limited life expectancy, intelligence, and health.

By physical by the way I meant the mobility, cardiac and kidney problems. None detectable antenatally by the way.

I'm deaf, so is one of my kids. Would I choose not to be? I don't know, I've always been deaf, so don't know the alternative. Yes it causes issues sometimes but not so much I miss something I've never had.

Down's Syndrome life expectancy is 60+yrs usually. It was previously much less due to babies and children with DS not receiving the help they needed, often being put at the end of waiting lists for heart operations etc. so "normal" children could go first.

I support the right of a woman to end a pregnancy for whatever reason, including "I don't feel like it". So yes, I support the right to abortion for the very valid reason of "I would rather bring to the world a baby without genetic defects, who will have health problems, very low IQ, and low life expectancy.

This is not eugenics, which would be done with a goal for the human race, but about being pro-choice. You don't have to have an amnio and terminate for chromosomal abnormalities. Others who want to, get to.

I thought life expectancy was about 50. I'm happy to hear that it has improved further, but 60 is still much lower than UK average which is 82.

*In some ways this thread has been good for me, so many dc with asd all across the spectrum who wouldn't change their child, if I'm honest I'm not at that point yet. If I could take away the autism tomorrow I think maybe I would.

However I'm coming to see that is probably more for me than him, he is a happy, loving child. He doesn't understand that he his different, he might never have that understanding I don't know. He certainly isn't unhappy, who am I to say I should change him just because I think it would make his life easier.*

Dixie, I'm guessing your son is younger than my daughter, who is 16. You do come to terms with it. My daughter recently had to have scoliosis correction surgery and the thought (rational or not) that I might lose her was a real eye opener for me that alot of the 'other stuff' Really doesn't matter so much. She faced that operation with such bravery and dignity you really wouldn't believe! If it had of been eighteen months earlier she wouldn't have coped with it, but she'd actually prepared herself to have it done. Obviously we helped her to understand what was going to happen, as did school but I realised she'd done this herself too. I think I can be guilty of thinking I need to do this, I need to do that, when in fact she's rather capable and really, amazingly resilient. I am SO proud her. I actually fear tearful writing this, but she really is a force to be reckoned with.

If I took away her learning disabilities and autism, she really wouldn't be who she is :( and I really couldn't get my head around that thought. I'm amazed anyone even has to ask the question if I could change her, would I? She's my daughter, of course I don't want to change her! She has her own personality and quirks and most of that is because of the complex nature of her disability. As I said earlier in the thread, I wish people would just view her as a human being. I guess that doesn't happen as it seems impossible to imagine someone with such a low iq could have value and quality of life and be happy, that's what any of us want, and that's what my daughter has.

Everything will be fine Dixie. We can all cope with what life throws at us, we may not think we can, be we can.

I think we are just at cross purposes. No one is proposing that children who are here be changed are wrong or anything like that. We are just saying like most UK parents we woudl rather give birth to children without down's, without deafness, without dyslexia. That is the majority UK view.

So it is going to be a bit a hurdle to convince the 96% of parents who have the test and then want to abort a down's baby. It may be they do not appreciate how wonderful it is to have a child with these kinds of differences than one who doesn't have them and they just need convincing.

Can we turn this around and if anyone on the thread who is happy with abortion in general was able to choose to abort a child without any of those issues would they do because they would rather wait until the down's or deaf baby came along or the one with the shorter lifespan?

Or the one with the mahoosive empathy bypass

I don't really see how a big education campaign would work. I guess you could do one on tv, FB, etc and try and tell the other side of the story as you see it. However, you couldn't target people with DS-diagnosed embryos because of privacy legislation I would think. All this wailing against the abortion rate of DS embryos seems pointless - the cat is out of the bag and people have the right to make the decisions that they want over their own pregnancies, thank goodness.

I can't see an "education campaign" having much effect. Sure, you can tell people that it is not as hard as they think, but at the end of the day you are still telling them to have a child who will always remain a child. Not many people will want to do that, whatever information you give them.