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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.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

I was unsure whether to have the tests but the midwife and consultant both said there was no point if I knew I would continue the pregnancy, I didn't have them but was worried that we might have a shock when dd and ds were born.

I get that orangenoodle
But I don't think anyone on this thread has said anything along those lines. Not one person has said that children with disabilities are worthless or not valued, the argument is that they felt it was best for their family not to have that child. Just as you felt it was best to have your child.

There's been messages on here that have been hard to hear for me too.

Suggestions I didn't love or want my baby.
Suggestions that he wasn't a baby at all but just a foetus.

Orange

But it is a choice people make personal to them, nothing to do with you.

What would you prefer, women were forced to carry and give birth to children they do not want to raise because you don't like that they might otherwise make different choices to you?

The personal choices we make have implications for wider society though. We don't make choice in isolation. Which is why these discussions are valuable, although difficult.

You ask me what I would prefer - proper informed choice and robust support for people who have disabilities.

It's not exactly clear to me what the OP is campaigning for.
Less reliance on testing? And what exactly is it that the OP is suggesting needs to change to make things better?
I hold a totally different view.
I have a child with what some consider a mild condition. I Houston for support for 5 years and got practically none.
Everyone agrees the support, the money within the NHS just isn't there. Plus people's ignorance and prejudice.

My friend has 8 year old boy with ds. She fought and fought to get the right support and get him statemented.

Maybe OP should concentrate on the NHS provision, support generally, and prejudice.

Not that any of those are really going to get any better. They are only going to get worse. So maybe fighting it is s waste of time.

I'm not sure what if anything can realistically be achieved.

I completely agree there should be more support, absolutely. There quite simply isn't enough and I fear that the way the Govn cuts are going, that won't happen any time soon.

I do think though that most do make their decisions, either way, in an informed manner though.

The personal choices we make have implications for wider society though. We don't make choice in isolation. Which is why these discussions are valuable, although difficult.

But no one here seems to expect women to think about the impact of their individual termination on national termination rates, or on the number of babies available to adopt.

Similarly, it isn't reasonable to ask women to make these decisions on anything more than what is the right choice for them and their families given their personal circumstances.

Orange, you said:

For me, the hard bit of hearing people talk about terminating because of disability is the message that gives families like ours that people who choose to terminate think the lives we lead are so unpalatable that it's worth ending a life for.

I don't think that's what people are saying, or the message they're sending, at all. Everyone has their own threshold of what they feel they are strong enough and equipped to deal with. Everyone has different levels of support available. Everyone makes decisions based on their own circumstances and their own lives. Why take the negative? For me, the message is 'I think parents who have continued pregnancies with known serious issues, in circumstances similar to mine, are amazing and strong, more so than I am.'

Are you anti-abortion in general? The last line of that paragraph suggests you may be.

I don't think it's fair to say that parents the chose to terminate haven't made an informed choice.

I did. No, I have never lived that life but I did what I could to find out what I could. Good stories as well as bad.

I don't understand why people can't just accept that one family may make one choice and another a different choice.
Maybe not intentionally, but I've been made to feel like what i did was wrong but has anyone suggested that parents who carry on with the pregnancy are wrong for doing that? Of corse not, because they are not wrong. Just like I am not wrong for choosing not to carry on.

As a parent carer of someone with severe and complex learning and physical disabilities, I'd question how much contact these drs and medical staff advising people, actually have with people with significant LD, because my experiences of hospitals would suggest not alot at all. Only very specialist consultants and surgeons (including anesthetists) within hospitals seem to have any experience at all.

But then again we only escaped 3 weeks ago from hospital so I'm most probably still sleep deprived

I think these threads will always raise hackles on both sides. But there are lots of positives, I made friends with devilishpyjamas for a start :) and we seem to bump into each other on mumsnet :o

'THAT is what the OP is about, not individuals choices.'

But it is, as it is due to individual choice that the rates of children born with Down Syndrome has fallen.

I had the nuchal test, then a CVS, then a tfmr for trisomy 21. It was a horrible time, devastating really as we had only conceived through fertility treatment.
I don't regret terminating though, I believe it was the right choice for us, horrible though it was. We discussed it even before ttc after a friend had a high risk result. We looked at all angles and were in agreement on what we would do.
I don't think everyone would or should make the same choice in the same position, it was a personal decision. I would never judge anyone for doing the same as us, and I would hope for the same courtesy and respect, it wasn't an easy time.
I would wish anyone who continued with the pregnancy all the luck in the world, and joy in their new baby, the same as I would with anyone.
I think the new tests which reduce the risk of miscarriage are going to be of benefit to those, like us who do want testing. Those who wouldn't terminate no matter what won't test, so it doesn't affect them anyway.
I wouldn't want to upset anyone with our decision - by choosing as we did we don't think anything negative about anyone who chose differently, just that they are braver and stronger than us.

zzzz - that already happens, just not in the uk. China and India both have extreme gender bias in favour of male foetus'.

Would you think eradicating Huntingtons disease was a tragedy? That too is life limiting, more so perhaps than DS as it is fatal.

Responding to a comment way up thread. I read about t21 as an evolutionary adaptation I'm a book called baby wars written by an evolutionary biologist in 1999. It is still in print by Harper Collins.

Authors name is Robin Baker.

I find it harder to accept that we can't talk about a life without DS in any sensible way

Agree with this. We have a variety of personal experiences but the choice to terminate or not terminate pregnancies where a disability has been identified has implications for our whole society.

in what way was DS an evolutionary adaptation?

You might find it sad that people terminate for disabilities but you can't force people into knowingly keeping a disabled child and why would you want to? A lot of people simply wouldn't be cut out for it and there would be a lot more abandonment of children and a lot of disabled children living lives where they are not loved and cherished and looked after.

I posted the theory which I have only ever read about in that book at 8:13.I also said that it's an interesting idea.But is just a suggestion.(not mine). I also posted about my not inconsiderable experience with individuals with t21. Please read what I have written or better still Robin Baker's book.

If there were tests available in pregnancy for blindness, deafness, schitzophrenia, cystic fibrosis, ASD, wonder what would happen? Would people with those conditions lobby to stop the use of the tests? Would women terminate pregnancies? Is there something people particularly fear about having DC with an intellectual disability?

There is also the question around discrimination. Testing for T21 and it being an acceptable choice to terminate a pregnancy where T21 has been identified sends the societal message that there are cicumstances where disability discrimination is acceptable. A foetus clearly has no legal rights but the adults making the decision are doing so because they don't want disability in their lives. There is no way of separating the fact that this contributes to discrimination of living people with disabilities because a disabled life is less valued.

I worry that this practice is contributing to the ending of lives that are worth living.