Tuesday 11 December 2018

Sarah Caden: A refusal to discuss Down syndrome is the greatest disrespect

If we fail to talk about it in the repeal debate, we will do people with Down syndrome a disservice, writes Sarah Caden

"If we fail to talk about it in the repeal debate, we will do people with Down syndrome a disservice" Photo: Getty Images

Sarah Caden

At a certain point in the last seven-and-a-half years, I decided to stop answering the question: "Did you know before she was born?"

Some people asked it innocently, merely wondering if it had been a shock when my daughter was born with Down syndrome.

With others, however, I knew it was pointed.

These were the people who were trying to ascertain my side of the fence. I was even congratulated once when I said that I hadn't had the tests while pregnant.

I mentally kicked myself for giving them the imagined ability to decide that put me on the anti side of the abortion debate.

In the same spirit, I have resisted entering into the conversation about repealing the Eighth and Down syndrome (DS). I don't want to write this. I don't want to enmesh my experience as a parent of a child with DS or my child herself, in the argument. I don't want either side claiming me or her.

And I don't speak for her. Nor do I speak for any other parents of people with DS or any other people with DS. Many of these will disagree with me entirely, because we're not a coherent group bonded into consensus by the experience of a third chromosome 21. 

But I feel compelled to speak because there has been so much shutting down of this conversation in recent weeks. One side shouts "eugenics", the other shouts "offensive", and we get nowhere, as usual.

I don't hold with putting photographs of cute children with DS on posters. Nor would I ever judge or condemn or even blame the people who decide to terminate a pregnancy with a DS diagnosis.

That is their choice. However, what I wish we could explore as we discuss repealing the Eighth, is what that might mean for the existence of DS in Irish society.

And don't bother saying it will have no effect or jump up and throw at me the Netherlands, either, because that's just dismissive cherry-picking.

For some reason, we've adopted the Netherlands as our poster-people for proper and decent behaviour around pre-natal DS testing and decisions to proceed and terminate. You could choose to take Iceland instead, where between 80 and 85pc of pregnant women avail of testing and where almost 100pc of pregnancies diagnosed with DS are terminated.

In 2015, Denmark had a termination rate for DS of 95pc, in cases of positive diagnosis. In the same year, France had a 77pc rate of termination for DS. 

There are stats on termination internationally that can be selected to back up any position, but, for some reason, the Netherlands is the one we've decided we'll model ourselves on. As if the Netherlands are historically our go-to on how we conduct ourselves. We're not the Netherlands. Nor are we Iceland, nor are we France or the US.

We are Irish and we are, as usual, refusing to discuss something until it happens. We keep being told, by TDs and journalists and Dr Peter Boylan that it's OK, the DS issue is a red herring because tests can't occur conclusively before 12 weeks and they are very expensive and availed of by only a few.

Therefore, we're told, it's misleading and unhelpful even to discuss how pre-natal testing could have an impact on the incidence of DS. We're being told not to worry about that. It's never going to happen. 

Last week, Health Minister Simon Harris shut down any proper conversation about termination of pregnancies diagnosed with DS by saying that he found it "somewhat offensive to suggest women in Ireland are seeking abortions for that reason [disability]". 

The following day, it was reported that over 2015 and 2016, there were 83 Irish women who had pregnancies terminated in the UK under its "Clause E", which allows for termination in cases of "severe disability". 

One point to be made in relation to this statistic is that there are 120 births recorded with DS annually in Ireland. If you took it that there were about 40 terminations for DS in both the cited years, then that would mean that a quarter of all pregnancies diagnosed with DS were terminated. 

Also, we don't know how many pregnancies were diagnosed with DS and decided not to terminate.

So it could be the case that 100pc of those who did the test and got a diagnosis chose to terminate, or it could have been 50pc or even 10pc. We don't know because we don't have those statistics. This is more of the attitude to date in this country, where we have chosen to pretend that termination doesn't happen. This is what we're supposed to be getting away from, an attitude that if we pretend something isn't happening, then it isn't happening. 

To date, we have let termination occur elsewhere, out of sight, out of mind, or in women's bedrooms with pills they bought on the internet, and now we're trying to grow up and talk about it and do something about that. 

So why, then, are we shutting down conversation about termination in cases of disability by saying it's "somewhat offensive" to think that any Irish person would do such a thing?

Two days later, Minister Harris modified his comments to say that no Irish person would take the decision "lightly" to terminate in a case of DS diagnosis. Apart from the fact that he was proven to be wrong in asserting that Irish women wouldn't terminate for disability, perhaps he realised on reflection another hole in that suggestion. For if you're saying termination for disability is offensive, because an Irish person would never do such a thing, then what are you saying about economic reasons, or case of rape or inability to cope? 

Too often lately, the debate around testing for DS has been batted away with the assertion that discussion of it is irrelevant because it has no bearing on the 12-weeks-unrestricted proposal.

The assertion is that presently, the tests available pre-12 weeks are not definitive and also, at a cost of approximately €500, prohibitively expensive to most people. 

A private clinic in the Beacon in Dublin offers the Panorama test from week nine of a pregnancy. It is not a diagnosis, but its results indicate probability of a chromosomal syndrome. 

The patient with an indication can then decide to go for a Chorionic villus sampling (CVS) test, which is not recommended before 10 weeks of pregnancy because of risk of miscarriage, and results are delivered in 10-14 days - though one clinic said they can have results in a week. The website of the Rotunda Hospital says that if the patient wishes, and for an additional fee, they can get results of CVS in two-three days.

If you crunch these numbers, it is the case that it's possible the 12-week limit would pass before a diagnosis of DS was reached. However, even if this was absolutely the case, this is not grounds to dismiss any conversation about it as irrelevant, or a distraction, or in some way abusive of people with DS and their families. 

Dismissal of the issue of testing as irrelevant is at best disingenuous. It shocks me that Dr Peter Boylan, who spent so long in obstetrics, doesn't acknowledge that testing is an issue because technology changes so fast.

Today, it might be unlikely for a DS diagnosis to land before 12 weeks, but next year it might be achievable in 10 weeks. The science behind testing has changed massively in the last decade.

Testing was once only possible from the second trimester, now you can get a good indicator of DS from week nine. Are we really saying that this won't change or, depending on your standpoint, advance?

The stifled, "offensive" discussion so far, deals only with the situation as it is right this minute and simply refuses to acknowledge that the technology around testing advances all the time and also that costs are not set in stone.

Interestingly, the Rotunda Maternity Hospital is currently involved in a study of the Panorama test that sees the €500 cost reduced to €350 for participants who take the test and then agree to tracking of their progress through and beyond the pregnancy.

Testing for chromosomal syndromes in pregnancy are now available for free on the NHS in the UK. There is no reason to think that we won't reach the same point. Which is why we simply need to talk about what this means. 

I need to repeat that I don't judge anyone who gets a diagnosis of DS in pregnancy and elects to terminate. I don't think they're wrong. I don't think people are wrong to test. I think it will be very wrong, however, in the case of repeal, if, before legislation is in place, we don't discuss these things.

To paraphrase Sean O'Rourke in his rigorous interview with Tanaiste Simon Coveney last Thursday, it's a dangerous thing to legislate on the basis of trust. 

In the Netherlands, if you want to make an example of their stable DS birth rates despite availability of both testing and termination, they seem to counsel very comprehensively pre-termination. 

Perhaps, when it comes to forming legislation here, we can talk about how pregnancies with diagnoses of disability will be dealt with. Will parents have it presented to them as something that will ruin their lives and possibly the lives of their existing children?

Will they be presented with the positives? Will they be told, as Ruth Coppinger put it in the Dail last month, that the raising of a child with a disability in Ireland is "no cake walk"? 

We need to talk about this honestly and the way things are going, I fear we won't. 

When Senator Ronan Mullen asserts that we "have a tradition here in Ireland where children with Down syndrome are perhaps more cherished than in many other countries", it is patronising and woolly when these children are in fact badly served by State and services. And not just when they are the kind of cute children you can put on posters and tug at heartstrings, but as teenagers and adults, too. That, however, is a problem in a society and not with people with DS themselves. What we need to discuss, perhaps, is what kind of society we wish to be. 

It may well be the case that the world is moving towards a point where congenital or diagnosable disability will not exist. That may be where science is bringing us, but we should talk about what that means to us as people, as a society. Even if that is difficult and divisive and causes some to invoke eugenics.

Everyone, on both sides, recognises that we are at a crossroads in Ireland right now. There is shame, surely on both sides, at how people have suffered from our tendency to stick our heads in the sand when confronted with difficult issues, export our problems and pretend that makes them go away. 

You may say it's disrespectful to discuss Down syndrome in the repeal debate. I suggest that to ignore it is worse and something we will live to regret. 

Sunday Independent

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