Sam Boal/

'Two-tier system' means couples still forced to travel for termination after severe foetal diagnoses

The legislation is due to be reviewed this year.

THERE IS CONCERN about how the State’s abortion legislation is working in practice three years on with pregnant women and couples reporting they still have to travel for terminations despite being told their baby is unlikely to live long after birth.

Termination for Medical Reasons (TFMR), a support group made up of parents who received a diagnosis of a fatal or severe foetal anomaly during pregnancy, has suggested some clinicians may be taking a more cautious approach in their diagnoses following the introduction of the legislation. 

One couple, who have shared their story on The Journal, received a diagnosis last year of Alobar Holoprosencephaly, a rare condition in which the brain fails to divide into two hemispheres.

Richard Stevenson said he and his wife Emma were told it was unlikely that their baby would survive labour, and in the event that the baby did survive the birth “it would probably be only minutes or hours before they passed away and that time would be spent struggling to breathe”.

“In the even more unlikely event that our child lived any amount of time, and best we could hope for would be about a year, they would never be able to move their arms or legs, never be able to speak, never be able to feed by themselves and at no point would they ever recognise us as their parents,” Stevenson said. 

When they were told a termination could not be facilitated in Ireland, he said they were shocked. 

“How was this happening? This is Ireland. We’re a liberal country. We just had a referendum for exactly this. I voted for it,” he said.

They travelled to England and Emma was induced at King’s Hospital in London. They said goodbye to their son Riley on 17 December. 

Claire Cullen-Delsol‏ of TFMR told The Journal that of the around 30 women or couples who came to the support group last year following a diagnosis, 85% had to travel for a termination. 

“I didn’t think we’d ever have to campaign again after the referendum,” she said. “I thought we were done. Not that there weren’t problems with the legislation, but we thought this target had been reached.”

Section 11 of the Termination of Pregnancy Act 2018 sets out the law on access to termination of pregnancy in cases where there is a condition present affecting the foetus that is likely to lead to the death of the foetus before or within 28 days of birth.

It requires the involvement of two medical practitioners, one of whom must be an obstetrician and the other a medical practitioner of a relevant speciality.

Both clinicians must examine the pregnant woman and both must certify that the termination of pregnancy can be carried out. 

Cullen-Delsol said she has heard of a number of other examples like Emma and Richard Stevenson since the legislation was enacted, involving conditions which “are horrific but won’t be covered”.

“They probably could come under the legislation. The likelihood is these babies won’t survive birth, but because of the 28 day expectation of life and the fact that two doctors have to certify it, it’s restrictive and some doctors won’t touch it.

There are three conditions in Ireland which will practically guarantee a termination for medical reasons; Anencephaly Patau syndrome and Edward’s syndrome. Outside of that the doctors still feel criminalised. Now people are travelling after being told about conditions that three years ago you’d be told were fatal.

“Because everyone had to travel abroad, doctors felt more comfortable confirming those conditions were fatal.”

She said during the debate ahead of the referendum, the group was told that these types of cases would come under the clause which states a termination can be carried out if there is a risk to the woman’s health. In practice, she said, this has not happened. 

“So we have this two-tier system now, which can make people feel worse. And the hospital you go to or the consultant you get can make a difference, it’s not being consistently applied across all maternity units.”

Cullen-Delsol‏ said the legislation needs to be amended to decriminalise doctors and the distinction between severe and fatal foetal anomalies needs to be removed completely.

“Let women make the decision about whether they want to continue,” she said. 

In January 2019, the Royal College of Physicians in Ireland’s (RCPI) Institute of Obstetricians and Gynaecologists issued clinical guidance on the management of fatal foetal anomalies and/or life-limiting conditions diagnosed during pregnancy.

The document lists a number of potentially fatal foetal anomalies or life-limiting conditions, including Holoprosencephaly, noting that prognosis may not always be clear at the time of diagnosis. 

For some parents, termination of pregnancy in Ireland may still not be an option, and this may be for complex reasons including legislative restrictions in Ireland for non-fatal but major foetal anomalies, the need to travel to another country for treatment, financial or social considerations, as well as to access specific medical procedures,” the document states.

“During this time, and before termination of pregnancy, these parents should be assisted with preparing for the birth and death of their baby. Opportunities for memory-making can be discussed and planned, as well as the logistics around making arrangements for the baby when the parents are back in Ireland.”

One clinician who spoke to The Journal said there may be some “anxiety among doctors about being sued” and they may be taking a more conservative than they did before the legislation.

“It was easier to be more fatalistic when you didn’t have to get involved in actually doing the termination, or to expose yourself to the possibility of being sued. 

“I have heard anecdotally of situations where a serious problem is identified, but the woman is told it’s not fatal and to come back. Two weeks later, they’ll be told it got worse, and then maybe a week or two later they’ll be told it looks like it’s going to be fatal now.”

Professor Mary Higgins, consultant at the National Maternity Hospital in Holles Street, said she is aware that some people are still travelling for terminations, but she said terminations will be done at the hospital if a diagnosis meets the fatal foetal abnormality criteria.

While consultants can say with some degree of certainty that a diagnosis of conditions such as anencephaly would be fatal, there are cases, she said, that are more difficult to define.

“Where it becomes difficult is that blurred line between what is severe disability and what is fatal. In some cases, it would be fatal unless you do an operation and this operation is possible to do. This starts to get challenging,” she explained.

“There may be people [clinicians] who are veering towards conservatism and others who will have a more liberal approach. But you won’t have a situation where it’s 100% one way or the other, that’s why we have two people involved. Usually, you would get a few opinions so you can genuinely say to the patient that it is the most informed position.

“We are getting people who are getting diagnosis of a severe disability who say ‘I voted for this, why can’t I get it?’ and it’s awful to say that it’s not fatal enough, ‘not fatal enough’ is a horrible phrase and it’s awful to tell people that. This is not a black and white situation.”

The legislation is due to be reviewed now, three years after its passage, and the Minister for Health has said this review has now begun, though it is at an early stage. 

In a statement to The Journal, the HSE has said the operation of the legislation is a matter for attending clinicians and medical practitioners are “bound through professional regulatory mechanisms to operate in accordance with best medical practice”. It pointed to the RCPI’s clinical guidance on the termination of pregnancy and the pathway for management of life-limiting conditions diagnosed during pregnancy.

The HSE said it is open to the person concern to seek a second opinion on the diagnosis or to seek a review in cases where a medical practitioner has not given an opinion, or has given an opinion that would not lead to a certification for termination of pregnancy to be carried out.

“Section 13 of the Act provides that the pregnant woman, or a person acting on her behalf, may make an application to the HSE for a review of the relevant decision. Within three days of receiving such an application, the HSE must convene a committee of medical practitioners to review the relevant decision,” it said.

“The committee must complete its review not later than seven days from the date on which it was established.”

The HSE said services for termination of pregnancy under the Health (Regulation of Termination of Pregnancy) Act 2018 have continued to function during the Covid-19 pandemic.

“There is regular ongoing engagement between the Department of Health and the HSE to facilitate the operation of the service and to resolve any operational issues that may arise.”

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