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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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I’ve just read the prior story about the couple who have recently lived through this dreadful experience. It was a harrowing read. It’s criminal that they had to travel to England while already grieving the pending loss of their son. I’m shocked that this is still happening in Ireland. My heart goes out to that poor couple and anyone else that has to go through it.
The one thing Fine Gael claimed responsibility for that was good .. and once it was done, they didn’t bother their holes actually seeing it thru. It was all for show, just to get votes. And now these poor people still have to go abroad. Fine Gael won’t change it either unless enough people make noise.
@Rob Gale: I don’t know what it’s going to take for people to realise that nothing in this country will improve under FF or FG. They treat people with chronic pain with equal disdain by introducing the medical cannabis bill and then making it almost impossible for anyone to get a licence. For the lucky few who do manage to get a licence they make it almost impossible to get the product. They’ve also made sure it’s cost prohibitive. I know it’s a separate issue but it demonstrates the complete lack of empathy FFG have for people with genuine medical needs. Of course the UK is miles ahead of us on both issues. Anyone who votes for FFG is equally culpable at this stage.
@Declan Doherty: and the alternative is?
@Lesidees: It will be up to the nation to decide that.
@Lesidees: literally anyone. A jar with snot in it would do a better job.
There is no love here for that baby .
That’s what is wrong here
So the gov passed a new law but can’t actually apply it properly.
This country is run by Muppets
@billy bound: my reading of the article wasn’t that the law was being applied properly, rather that certain medics don’t want to make hard decisions. Prior to the law changing there was little impact upon a doctor declaring a pregnancy as suffering a fatal fetal abnormality and allowing the problem to be hidden away overseas, now that the law allows for such terminations to happen in Ireland some medics appear to be more reluctant to diagnose FFA than before
@D. Memery: I read it that doctors are afraid of prosecution or being sued if they make a decision to terminate. Some doctors who might object on conscientious grounds are hiding behind the law to get out of making a decision. The law needs to change to remove any doubt.
@Declan Doherty: conscientious objection is not hiding behind the law. If FGM were still legal and there were Drs who used their right to conscientious objection would you be making the same comment?
To Emma, Richard & Riley my heartfelt sympathy. Your story is harrowing, I read it with tears streaming down my face. What you have and continue to go through is so hard. Please know I and I’m sure , many many more people are sending you our support and love xx
@Ger. Grehan: apologies, The Journal said my comment hadn’t submitted, hence the duplication.
You can rally a whole country to give women more body autonomy and still they have to abroad.
That a medic doesn’t want to give a diagnosis after all that is also concerning as it undermines the trust in their decision of the past and for the ones to come.
@Vanessa: they do give diagnoses and it is not that they are afraid to give a prognosis but rather that they are unable to give an exact time for how long babies diagnosed with life limiting conditions will live for. It was mentioned that one of the life limiting conditions that will “guarantee” an abortion of a baby is Edwards syndrome. Elaine Fagan, was diagnosed with Edwards syndrome and expected to die in utero or shortly after birth. She live until the age of 25 yrs and happily so by her parents accounts. A few minutes to 25 years, it’s their life to live.
@Aine Healy: it’s a roll of the dice though, Elaine Fagan is one person.
@Sirius: not sure what your point is? As per my last line “a few minute to 25 years, it’s their life to live”. In other words, why should how long someone will live for dictate whether of not they should be afforded ‘their’ human right to ‘their’ life?
@Aine Healy: In your opinion, it’s the Parents mothers choice, any Doctor with religious objections shouldn’t be allowed to subvert the mothers choice & there’s no need for second opinions it’s been wrote in to further prevent abortions happening, by zealots thinking they know better
Headline should read. Nothing else happening. All electives closed until further notice. Its a fkn joke.
@Gavin Linden: do you want to inflict further emotional suffering and psychological trama on couples, that will deliver children that will only live extremely short lives measured in hours or days of misery and pain, just because you feel that you occupy some moral high ground on an issue that doesn’t directly effect you?
If you find yourself facing these circumstances, then you can legally decide what course of action you wish to take, based on your own beliefs or moral compass, why cant you respect the rights of others to have the same legal support for their choices and options here in Ireland?
@David Van-Standen: Ignorance is a real problem in Ireland. It manifests itself in many areas of Irish life and usually can be seen most often in people who have never personally experienced a particular issue in their lives but they hold an unwavering conviction of the merit of their conviction versus the people who are living with the reality of the issue.
It’s not a peculiarly Irish thing but it’s very prevalent here.
@David Van-Standen: FGM was “legal” up until a few years ago in Ireland ( 1985 in the U.K.). If it were still legal, would you say to those objecting to that procedure and protesting against it “why can’t you respect the rights of others to have the same legal support for their and options here in Ireland”?
@Dearbhla O Reilly: just because someone doesn’t support abortion, it doesn’t mean they spend their spare time kicking babies and drowning puppies in sacks. The mother and baby homes were a disgrace and shameful that it went on. Totally different topic. Everyone has their opinion and just because it doesn’t match your opinion, it doesn’t make it wrong.
This is why absolute laws don’t make good laws. People say “oh if there’s discretion it’ll be abused”. When there’s no discretion the system becomes the abuser.
@Gerard: Excellent point.
@Gerard: that’s why you don’t make laws for the general based on the rare. Pregnancies of babies with life limiting conditions ( and pregnancies from rape) account for approximately 1 % of pregnancies, yet it was parents, babies and victims / survivors of these rare and difficult cases that pro abortion campaigners continually exploited and highlighted, to successfully garner support for their goal of “abortion on request” so called ie, abortion for any reason at any gestation.
That said, there is no medical reason to abort a child because he or she has been diagnosed with a life limiting condition ( or because he or she has been conceived from rape. )
@Gerard: also groups such as the nonsense entitled TFMR ( there is no medical reason to abort a child because he or she has a life limiting condition),did not and do not want legalised abortion just for babies diagnosed with life limiting conditions, by rather they want abortion for any conditions from the most mild to life limiting. Unfortunately, due to the sensitive nature of these cases, they were never challenged on that. They also continue to use made up
terms such as “ffa” (although in more recent times they switched “abnormality” to “anomaly” using the term “fatal foetal anomaly” which is equally a nonsense term as they know. However, they know that such fatalistic terminology will create a conflict in public consciousness in their favour, and indeed, such terminology is likely to engender fear and hopelessness in the expectant parents as we know.
The correct terms are actually “fetal anomaly” or “life limiting condition”. There meanings obvious not to mention honest.
@Aine Healy: There may not be a ‘medical reason’ to terminate in the scenario to which you allude, but the principal reason not to terminate being someone else’s religion is unacceptable. You really shouldn’t want others to be as miserable as you would be in the same situation. That’s just plain wrong.
@Fachtna Roe: not “alluding” to anything clearly. Can you explain you comment “the principal reason not being able to terminate being someone else’s religion is unacceptable”?
Where in the article did it say that the couple could not have their baby aborted on religious grounds?
@Aine Healy: pro choice groups will continue to campaign until such time as every female has access to abortion if that is what she wants to do. Nobody is going to force any woman to have an abortion. If you don’t want an abortion, don’t have one. It’s laughable that you think you should have more of a say over someone else’s pregnancy than the one who is pregnant.
@Sirius: many women and girls are coerced into aborting their child.
To use the “don’t want an abortion don’t have one” as a defence of aborting pre born human beings up to birth for any discriminatory reason against him or her is not a good argument. That thought process could be applied to any other human rights abuse Eg slavery. Don’t like slavery don’t own one. Don’t like domestic violence don’t beat your partner. And so on and so forth. You can see how your argument is a fail.
Can you tell me how I have a say over someone else’s pregnancy?
@Sirius: whats laughable is you thinking you should be entitled to decide whose life is more evaluate. What’s laughable is you, and others, thinking it s right of theirs to decide who gets to live or die. Its laughable you think you have any more of a right to your beliefs than another person.
Your absurd logic could be applied to anything. Just because something is lawful does not make it moral.
Don’t want a slave? Fine, don’t have one. Don’t want drugs? Fine, don’t. But sure if other people believe in slavery and drugs then they should be allowed to peruse them – according to your logic.
@Aine Healy: any evidence to back up your claim that “many women and girls are coerced”?
@Denise Ní Cinnseala: my body my choice. No idea why you’re bringing all that whataboutery into the discussion.
@Sirius: you can always do your own homework. Abortion is an abusers dream come true, especially DIY abortion, which pro abortion campaigners also wholly advocate for.
This is just one report of many. https://www.independent.co.uk/news/uk/home-news/pregnancy-coercion-reproduction-abortion-a8834306.html
@Sirius: you can always do your own homework. Abortion is an abusers dream come true, especially DIY abortion, which pro abortion campaigners also wholly advocate for.
This is just one report of many. https://www.independent.co.uk/news/uk/home-news/pregnancy-coercion-reproduction-abortion-a8834306.html
@Sirius: im sorry, how many abortions has your body been through? As far as im aware, the baby being aborted is not your body, so please find an original slogan that at least makes sense.
To Emma, Richard & Riley my heartfelt sympathy. Your story is harrowing, I read it with tears streaming down my face. What you have and continue to go through is cruel . Please know I and I’m sure , many many more people are sending you our support and love xx
Thank you, Emma & Richard, for sharing your story. Suaimhneas libh.
@Rob Gale: parents do not “have” to travel to have their children aborted. They choose to. There is no medical reason to have a child aborted because he or she had been diagnosed with a life limiting condition ( no such medical term as “ffa”). In the case mentioned in the article, the reason their baby couldn’t be aborted here was because their baby could live far longer than expected and beyond the 28 days that Simon Harris hoped to include all babies diagnosed with life limiting condition. As an aside it was impossible for those medics to know exactly how alobar holprocencephaly would manifest in their baby. Nor did the care team me the support groups Every Life Counts / One Day More / Hughs House or the other care groups who offer all manner of amazing supports to parents whose babies have been diagnosed with a life limiting condition from diagnosis to birth and beyond.
@Aine Healy: @Aine Healy: so you think they should be forced to keep the baby alive for maximum of a year with breathing difficulties and in constant pain and not have cognitive thought? To put the couple thru that? Part of repealing the 8th amendment was to give parents the choice to not needlessly go thru that. The parents.. not you or anyone else.
@Rob Gale: Hi Rob. Pregnancy can not be forced. What you are really saying is should parents be prevented from forcing death on their baby who has been diagnosed with a life limiting condition.
Again, no medic can state with certainty how long a baby with a life limiting condition will live for. Nor can any medic state with certainty how any of those conditions will manifest in any given child, including alobar Holoprocencephaly. You can see this from the subtle use of terms such as “likely” and other such uncertain terms.
Certainly these especially babies with life limiting conditions have difficulties to varying degrees. The problem lies with the implications and inferences that these babies are in pain, suffering and have no quality of life.
These falsehoods ( and they are falsehoods), encourage and perpetuate an ableist mindset. Life limiting conditions are typically not associated with pain and all individual manifestations of their individual conditions are treated by the medical care team and adjunct supports.
These cases account for approx 1% of pregnancies). Nobody denies that these cases are not tragic difficult and compelling. It’s the main reason that abortion campaigners exploited
them ( along with rape victims / survivors also 1%), to garner support for their real agenda of abortion “on request” so called.
It appears that at no point were these parents given any positive feedback or terminology, nor encouraged to continue with the pregnancy with the help and support of such groups like Every Life Counts / One Day More / Hugh’s House run by those parents with direct experience of having a baby diagnosed with a short life expectancy.
I am curious as to how long you believe a baby diagnosed with a life limiting condition should live for, before you believe he or she should be afforded their right to their life?
@Aine Healy: it’s interesting how you describe the groups who align with your beliefs in such flowery language but call TFMR “nonsense”.
@Sirius: those are the names of the groups and not names that I personally assigned to them. TMFR is ( Termination “For”
medical Reasons nonsense because, again there is no “medical reason” to abort a child ‘because’ he or she has been diagnosed with a life limiting condition. “Termination ( or Abortion) for Life Limiting Conditions” (TLLC) perhaps would be more honest.
@Aine Healy: well that’s the point .. it’s not up to you or I. It’s the choice of the parents. Also, I would believe a doctor saying the baby has X amount of time to live, over you saying it could live longer and happily. And I wager the parents did too.
@Rob Gale: again, no Dr can state with certainty how long a baby diagnosed with a life limiting condition will live for. These parents travelled to England to have their baby aborted precisely because the Dr couldn’t state with certainty how long their baby would live for and it was possible that Riley would live past his first month outside the womb. Because it was possible that with this condition Riley would live longer than 28 days ( the cut off point to abort a baby with life limiting conditions) his parents ‘chose’ to travel, ( they did not ‘have’ to) to have him aborted.
Nor can any Dr state exactly how such a condition would manifest in baby. For example, Riley’s Dad talks about how he was told that he would never be able to move his arms or legs but goes onto say when they were waiting to have him aborted that he was “kicking away” and so on and so forth.
To Emma, Richard & Riley my heartfelt sympathy. Your story is harrowing, I read it with tears streaming down my face. What you have and continue to go through is so cruel. Please know I and I’m sure , many many more people are sending you our support and love xx
To Emma, Richard & Riley my heartfelt sympathy. I read your story with tears streaming down my face. What you have and continue to go through is so cruel. Please know I and I’m sure , many many more people are sending you our support and love xx
Absolutely horrible what people need to go trough as if they don’t have enough with bad news. I’m so sad.
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