Tuesday 25 June 2019

Eilis O'Hanlon: 'Abortion campaigners should resist the urge to politicise personal tragedy'

Awful mistakes are bound to happen under any abortion regime. What's important is to learn the lessons from them

DILEMMAS: Diagnoses of foetal abnormality should never become political footballs
DILEMMAS: Diagnoses of foetal abnormality should never become political footballs

Eilis O'Hanlon

During last year's abortion referendum, pro-life groups frequently raised the cases of babies who'd been suspected to have fatal foetal abnormalities, but whose parents went ahead with the pregnancy anyway, and who were subsequently born healthy. Wrongful diagnoses make up a tiny percentage of the total, but they do happen.

It's now known that it has occurred at least twice in Ireland since abortion became legal in January. The first case to come to light happened in the past couple of weeks at the National Maternity Hospital in Dublin's Holles Street, where a couple given a diagnosis opted to go ahead with a termination, only for a second test to later reveal that the child was healthy. The Master of the Rotunda Hospital in the city has since confirmed that a similar situation had arisen there too.

The Minister for Health has already conceded that a review is now "warranted", though the Royal College of Obstetricians and Gynaecologists in Britain, where the test on the baby in Holles Street took place, has so far not been asked formally to conduct one.

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It's a reminder, if any were needed, that moving in one fell swoop from a constitutional ban on abortion to one of the most liberal regimes imaginable was always going to throw up pitfalls, and was best approached cautiously.

Earlier this year, just weeks after abortion came into law, Solidarity TD Ruth Coppinger and People Before Profit TD Brid Smith separately raised the issue in the Dail of a woman who had been allegedly denied an abortion despite a diagnosis of fatal foetal abnormality. It was a strange case, whose details have yet to be made clear; the hospital told the woman in question that the baby's condition was complex, but not fatal under the terms of the legislation.

Pro-choice campaigners cynically used this case to suggest that Irish women were being denied what was now their constitutional right to an abortion. It should now be apparent that there are risks either way, and that diagnoses of fatal foetal abnormality should not become political footballs. It should give everyone pause, but probably won't.

Pro-life campaigners should certainly resist the urge to make political capital out of this tragic incident. It risks looking opportunistic, even gleeful. It's also best not to make arguments from the hardest of all cases. Doing so right now would be equivalent to the way that campaigners screamed during the referendum at those with doubts about abortion: But what about rape? What about incest? We can all find extreme cases that strengthen our points. They rarely make the discussion more edifying.

These tragedies are bound to happen. Medicine is not an exact science. That was openly discussed before, during and after the referendum campaign. Speaking in a personal capacity earlier this year, Dr Sam Coulter-Smith, former master of the Rotunda Hospital, pointed out that decisions are not always as clear cut as those looking in from the outside might expect or hope.

"A foetal medicine doctor has to make a judgment on whether the baby's abnormality will be fatal within 28 days of birth, and a colleague has to agree with that," he said. "These situations are complex, and clinicians need time and experience of the complexities of providing this new service."

Nuance may have been discouraged during the referendum campaign, when admitting that healthy babies would inevitably be terminated if the legislation went ahead, and often later in pregnancy than many people would find morally comfortable, was seen as disloyal to the cause; but it wouldn't be accurate to say it wasn't known.

Having weighed up the options, voters surely accepted that the inevitable mistakes were a price worth paying for female bodily autonomy. It would be absurd to now rewrite history to suggest that somehow Irish people didn't know what they were voting for last May, or were sold a pup on the basis of half truths. It treats people as idiots instead of respecting their choice.

At the same time, it's equally important that pro-choice campaigners resist as much as possible the "mistakes happen" narrative. So far the usual suspects in that company have been remarkably silent about this new case, a stark contrast to their noisy protestations in January when the opposite set of circumstances was believed to have occurred.

When they finally have the courage to speak up, they should choose their words very carefully, especially when the parents of the baby in the Holles Street case are said to be "utterly, utterly mentally and physically devastated" by what has happened, and to "want answers, the truth and transparency".

The baby in this case tested positive for a potential abnormality in chromosome 18, which can result in a fatal foetal abnormality known as Edward's Syndrome, or Trisomy 18. Guidelines state that most babies with complete Trisomy 18 die during pregnancy or shortly after birth, and within a year if the condition is partial, though there will always be outliers who defy the odds. Diagnoses of Edward's Syndrome accounted for 20 of the 141 terminations carried out on Irish women who went to the UK for that purpose in 2016.

The method used in the Holles Street case is what's known as cell-free DNA testing, and is the most accurate available. Under trials conducted by the NHS in Britain in recent years, only one baby was wrongly diagnosed, giving a false positive rate of 0.01pc, compared to 0.31pc for the previous testing method. There is also a 0.5 to 1pc risk of miscarriage just from taking the test. The tragedy for the couple in the case now set before the public is that they fell into that margin of error; but burying their personal grief under statistics would be treating dead babies as the medical equivalent of collateral damage.

It would also do exactly what "right to choose" activists claimed that pro-lifers did when Savita Halappanavar died in 2012, by pointing out that mismanagement of sepsis happens under all maternity regimes, and that the rate of women dying in pregnancy was still better in Ireland than elsewhere - which was all true, but which made the red mist descend on pro-choicers, who thought this a heartless thing to say to a grieving widower.

The rate of mistaken diagnoses in pregnancy in Ireland should be expected to be roughly similar to other advanced countries, and the number of false results will fall as the tests become ever more sophisticated; but that's no reason for complacency. The fullest inquiry must be carried out, not to find or punish the "guilty", who were most likely just hard-pressed professionals doing their best for patients, but to learn whatever lessons there are to be learned. The accuracy of screening programmes is a sensitive issue in Ireland right now, following a number of deaths of women who were given "false negatives" during cervical cancer screening. In both cases, the results were sent out of the country to be analysed, creating an extra legal and bureaucratic barrier to finding out what went wrong. It could be that Ireland will have to build up its own screening expertise in future so that, when things do go wrong, as they will, getting to the bottom of it is made easier.

It's about creating the best, most compassionate system possible, but it doesn't ultimately change the parameters of the abortion argument.

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