Support from readers like you keeps The Journal open.
You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.
If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.
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.
Advertisement
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.”
Related Reads
Opinion: Our baby would not live, so we had to travel to London. Our hearts are broken
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.”
Readers like you are keeping these stories free for everyone...
A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article.
Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation.
To embed this post, copy the code below on your site
Close
49 Comments
This is YOUR comments community. Stay civil, stay constructive, stay on topic.
Please familiarise yourself with our comments policy
here
before taking part.
'A stain on society': Homelessness hits another record of 15,286 people in emergency accommodation
Updated
40 mins ago
4.1k
Fighter Planes
Simon Harris is 'convinced' that Ireland needs its own squadron of fighter jets
Niall O'Connor
Reports from The Curragh Camp
24 mins ago
1.3k
0
New Mexico
Police 'keeping everything on the table' in deaths of Gene Hackman and wife Betsy Arakawa
Updated
17 hrs ago
103k
78
Your Cookies. Your Choice.
Cookies help provide our news service while also enabling the advertising needed to fund this work.
We categorise cookies as Necessary, Performance (used to analyse the site performance) and Targeting (used to target advertising which helps us keep this service free).
We and our 153 partners store and access personal data, like browsing data or unique identifiers, on your device. Selecting Accept All enables tracking technologies to support the purposes shown under we and our partners process data to provide. If trackers are disabled, some content and ads you see may not be as relevant to you. You can resurface this menu to change your choices or withdraw consent at any time by clicking the Cookie Preferences link on the bottom of the webpage .Your choices will have effect within our Website. For more details, refer to our Privacy Policy.
We and our vendors process data for the following purposes:
Use precise geolocation data. Actively scan device characteristics for identification. Store and/or access information on a device. Personalised advertising and content, advertising and content measurement, audience research and services development.
Cookies Preference Centre
We process your data to deliver content or advertisements and measure the delivery of such content or advertisements to extract insights about our website. We share this information with our partners on the basis of consent. You may exercise your right to consent, based on a specific purpose below or at a partner level in the link under each purpose. Some vendors may process your data based on their legitimate interests, which does not require your consent. You cannot object to tracking technologies placed to ensure security, prevent fraud, fix errors, or deliver and present advertising and content, and precise geolocation data and active scanning of device characteristics for identification may be used to support this purpose. This exception does not apply to targeted advertising. These choices will be signaled to our vendors participating in the Transparency and Consent Framework.
Manage Consent Preferences
Necessary Cookies
Always Active
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not then work.
Targeting Cookies
These cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.
Functional Cookies
These cookies enable the website to provide enhanced functionality and personalisation. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then these services may not function properly.
Performance Cookies
These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies we will not be able to monitor our performance.
Store and/or access information on a device 105 partners can use this purpose
Cookies, device or similar online identifiers (e.g. login-based identifiers, randomly assigned identifiers, network based identifiers) together with other information (e.g. browser type and information, language, screen size, supported technologies etc.) can be stored or read on your device to recognise it each time it connects to an app or to a website, for one or several of the purposes presented here.
Personalised advertising and content, advertising and content measurement, audience research and services development 137 partners can use this purpose
Use limited data to select advertising 106 partners can use this purpose
Advertising presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type or which content you are (or have been) interacting with (for example, to limit the number of times an ad is presented to you).
Create profiles for personalised advertising 79 partners can use this purpose
Information about your activity on this service (such as forms you submit, content you look at) can be stored and combined with other information about you (for example, information from your previous activity on this service and other websites or apps) or similar users. This is then used to build or improve a profile about you (that might include possible interests and personal aspects). Your profile can be used (also later) to present advertising that appears more relevant based on your possible interests by this and other entities.
Use profiles to select personalised advertising 78 partners can use this purpose
Advertising presented to you on this service can be based on your advertising profiles, which can reflect your activity on this service or other websites or apps (like the forms you submit, content you look at), possible interests and personal aspects.
Create profiles to personalise content 38 partners can use this purpose
Information about your activity on this service (for instance, forms you submit, non-advertising content you look at) can be stored and combined with other information about you (such as your previous activity on this service or other websites or apps) or similar users. This is then used to build or improve a profile about you (which might for example include possible interests and personal aspects). Your profile can be used (also later) to present content that appears more relevant based on your possible interests, such as by adapting the order in which content is shown to you, so that it is even easier for you to find content that matches your interests.
Use profiles to select personalised content 34 partners can use this purpose
Content presented to you on this service can be based on your content personalisation profiles, which can reflect your activity on this or other services (for instance, the forms you submit, content you look at), possible interests and personal aspects. This can for example be used to adapt the order in which content is shown to you, so that it is even easier for you to find (non-advertising) content that matches your interests.
Measure advertising performance 127 partners can use this purpose
Information regarding which advertising is presented to you and how you interact with it can be used to determine how well an advert has worked for you or other users and whether the goals of the advertising were reached. For instance, whether you saw an ad, whether you clicked on it, whether it led you to buy a product or visit a website, etc. This is very helpful to understand the relevance of advertising campaigns.
Measure content performance 60 partners can use this purpose
Information regarding which content is presented to you and how you interact with it can be used to determine whether the (non-advertising) content e.g. reached its intended audience and matched your interests. For instance, whether you read an article, watch a video, listen to a podcast or look at a product description, how long you spent on this service and the web pages you visit etc. This is very helpful to understand the relevance of (non-advertising) content that is shown to you.
Understand audiences through statistics or combinations of data from different sources 75 partners can use this purpose
Reports can be generated based on the combination of data sets (like user profiles, statistics, market research, analytics data) regarding your interactions and those of other users with advertising or (non-advertising) content to identify common characteristics (for instance, to determine which target audiences are more receptive to an ad campaign or to certain contents).
Develop and improve services 82 partners can use this purpose
Information about your activity on this service, such as your interaction with ads or content, can be very helpful to improve products and services and to build new products and services based on user interactions, the type of audience, etc. This specific purpose does not include the development or improvement of user profiles and identifiers.
Use limited data to select content 39 partners can use this purpose
Content presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type, or which content you are (or have been) interacting with (for example, to limit the number of times a video or an article is presented to you).
Use precise geolocation data 43 partners can use this special feature
With your acceptance, your precise location (within a radius of less than 500 metres) may be used in support of the purposes explained in this notice.
Actively scan device characteristics for identification 25 partners can use this special feature
With your acceptance, certain characteristics specific to your device might be requested and used to distinguish it from other devices (such as the installed fonts or plugins, the resolution of your screen) in support of the purposes explained in this notice.
Ensure security, prevent and detect fraud, and fix errors 87 partners can use this special purpose
Always Active
Your data can be used to monitor for and prevent unusual and possibly fraudulent activity (for example, regarding advertising, ad clicks by bots), and ensure systems and processes work properly and securely. It can also be used to correct any problems you, the publisher or the advertiser may encounter in the delivery of content and ads and in your interaction with them.
Deliver and present advertising and content 97 partners can use this special purpose
Always Active
Certain information (like an IP address or device capabilities) is used to ensure the technical compatibility of the content or advertising, and to facilitate the transmission of the content or ad to your device.
Match and combine data from other data sources 69 partners can use this feature
Always Active
Information about your activity on this service may be matched and combined with other information relating to you and originating from various sources (for instance your activity on a separate online service, your use of a loyalty card in-store, or your answers to a survey), in support of the purposes explained in this notice.
Link different devices 51 partners can use this feature
Always Active
In support of the purposes explained in this notice, your device might be considered as likely linked to other devices that belong to you or your household (for instance because you are logged in to the same service on both your phone and your computer, or because you may use the same Internet connection on both devices).
Identify devices based on information transmitted automatically 85 partners can use this feature
Always Active
Your device might be distinguished from other devices based on information it automatically sends when accessing the Internet (for instance, the IP address of your Internet connection or the type of browser you are using) in support of the purposes exposed in this notice.
Save and communicate privacy choices 65 partners can use this special purpose
Always Active
The choices you make regarding the purposes and entities listed in this notice are saved and made available to those entities in the form of digital signals (such as a string of characters). This is necessary in order to enable both this service and those entities to respect such choices.
have your say