Opinion Columnists

Thursday 19 September 2019

Sarah Caden: 'In a situation of 'no hope', was there just one choice?'

Now we have choices, we need to believe there is compassionate help to make them, writes Sarah Caden

People gathered at Dublin Castle after the repeal of the Eighth Amendment in May 2018. Photo: Damien Eagers
People gathered at Dublin Castle after the repeal of the Eighth Amendment in May 2018. Photo: Damien Eagers

When solicitor Caoimhe Haughey appeared on Virgin Media News last week, she said that the couple she represents in the case of a mistaken diagnosis of fatal foetal abnormality did not attend the hospital for tests "with a view to having a termination".

"They went into this hospital to find out how well their pregnancy was going," Haughty said. "But this led them down a path when suddenly they're talking about termination. They never brought up the word termination."

Not only were they talking about termination without ever reportedly bringing it up, however, they were on the path to having a termination. They had a diagnosis of Trisomy 18, on the basis of the first of two tests, and, allegedly, they were discouraged from waiting for the second results.

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The matter, they were allegedly told, by staff in the National Maternity Hospital (NMH), was "black and white". There was "no hope" and waiting for the next stage of testing "would make no difference".

But as it turned out, waiting would have made all the difference.

In April, several weeks after diagnosis and termination, the couple attended the NMH and were given an envelope of results, which, on consulting a genetic specialist, they discovered that the baby had not had Trisomy 18.

The couple were devastated. According to Haughey, they were devastated by grief, but also by their treatment - and, she made clear, this is not just an issue of an individual couple but one that questions the management of situations like this in general.

Reactions to this terrible case need to make us look hard at how we are managing termination post-repeal. Now that the sweatshirts have been put away and the crushes on Simon Harris seem a bit embarrassing, we're in to areas that are tricky to navigate and testing of our convictions and extremely complicated.

For example, when we react to the story of this couple and their baby, do we think the real tragedy is that the baby did not have Trisomy 18 and therefore didn't "need" to be terminated? Do we place less value on the baby that we thought had the chromosomal anomaly? If we do, what does this say about how we're going to manage this brave new world where termination is an option and science will make testing and diagnoses possible earlier and earlier in pregnancy?

None of this is to say that it's not a valid choice to terminate in a case of Trisomy 18, where most babies die before or soon after birth - where, if they survive longer, they bear a number of severe physical and intellectual disabilities.

If that is the choice of a parent or parents of a baby diagnosed prenatally as having Trisomy 18, or any other issue that comes under the fatal foetal abnormality umbrella, then it's not for anyone to judge them.

What is at issue and what this case throws a light on, however, is the medical management of these situations.

The choice now exists to terminate, so how are the hospitals coping with the situation?

In this case, it would seem that the situation was presented as being entirely bleak - and though it would take less than a fortnight for second test results to arrive, there was no waiting around.

Who says that's the best option? Even if this couple were going to choose to terminate, should the second tests have come back and confirmed Trisomy 18, what was the rush?

What would have been the harm in letting them live with the situation a little?

In the telling of personal stories before the referendum, I read one Irish couple talk about travelling to the UK for a termination as a result of a FFA diagnosis. They did not regret their decision, though they wondered if taking the pregnancy to full term and then having a baby to hold and physically mourn might have helped.

There are plenty of stories such as this, and not with anti-abortion axes to grind, just stories full of complex emotions and reactions to a near-unbearable situation.

Choice is what we almost all opted for in the referendum - but care and compassion are key to allowing us make the choices that are right for us.

Last week, it was reported that there are no national guidelines for doctors on how to manage prenatal screening and testing in this new world. There are guidelines on treatment of pregnant women under the new law, but they are not specific in terms of testing and the degree of testing and the management of results.

The nub of this case is how the choices were presented to this couple. In what we have heard so far, there is a suggestion here that termination was the only choice in a "no hope" situation. And if that was the case here, is that the policy and if it is, has everyone agreed to it?

Last Tuesday, Leo Varadkar confirmed in the Dail that "steps were being taken for an independent review" into the case of a couple who had a pregnancy terminated in the National Maternity Hospital (NMH) on the basis of a diagnosis of Trisomy 18 that later turned out to be false.

Leo expressed sympathy for the couple, but that was as far as the conversation went. His heart went out to them, he said, but it would be inappropriate to discuss such a personal case in the Dail. They wouldn't get into it, because it wasn't respectful of their distress.

Given that this couple had clearly given their solicitor Caoimhe Haughey permission to go public with their situation, it could be argued that they would have found it more respectful to have the matter discussed.

An independent review would, of course, get to the full facts and whys and wherefores of the case, but that review isn't yet under way. We are merely in the steps-toward phase - and, let's face it, in this country we know all about how long these things take.

Without putting this grieving couple in the spotlight, this personal story is as important to the repeal of the Eighth Amendment as any of the personal stories that came before.

Those personal stories made us think about the human impact of the amendment. The personal stories now should make us think about how we manage the aftermath of its repeal.

And if this couple's reported experience is anything to go by, we really need to talk.

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