Termination of Pregnancy for Fetal Anomalies

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Termination of Pregnancy for Fetal Anomalies

Generating evidence to support the implementation of legislation in Ireland and enhance termination of pregnancy care experiences

The challenge

Termination of pregnancy for fetal anomaly (TOPFA) was introduced in Ireland in 2019. Section 11 of the Health (Regulation of Termination of Pregnancy) Act 2018 allows termination of pregnancy to be provided following a diagnosis of a fetal condition likely to lead to death in utero or within 28 days of birth.

The term fatal fetal anomaly (FFA) is used to describe congenital anomalies that will likely lead to fetal or neonatal death and is used interchangeably with the words lethal and life-limiting. FFA is not a medical term, but it gained popularity in Ireland during its use in the political campaigns to repeal the Eight Amendment of the Irish Constitution.

Approximately 2% of pregnancies are diagnosed with a congenital anomaly each year. A proportion of these anomalies will be lethal or fatal, and congenital anomalies remain the leading cause of fetal death and infant mortality. 

A diagnosis of major fetal anomaly in pregnancy is usually unexpected, and causes grief and distress, which can be exacerbated by inadequate care and support. Following the antenatal confirmation of a FFA, parents are faced with decisions concerning the remainder of the pregnancy, continuing the pregnancy and preparing for the birth of their baby, or choosing termination of pregnancy. Parents require accurate information in an empathetic and balanced way to make an informed decision.

Research was needed to inform the implementation of the legislation around TOPFA in Ireland.

Our work

Members of the Pregnancy Loss Research Group (PLRG) have led a range of studies exploring different aspects of TOPFA.

  • Analysis of perinatal deaths reported to the National Perinatal Epidemiological Centre during 2011-2018, led by Dr Stacey Power Walsh, identified that only 42% of perinatal deaths could be classified as a FFA in accordance with the Health (Regulation of Termination of Pregnancy) Bill 2018, highlighting the complexity of these cases/multiorgan system anomalies.
  • A critical discourse analysis of media commentary on FFA in Ireland led by Dr Stacey Power Walsh highlighted the influential nature of language and misrepresentations in the information being delivered to the public. It identified the need for healthcare professionals to expand their media literacy and to have knowledge of the information available to women and families who receive a diagnosis of FFA.
  • An assessment of the general public's knowledge of fatal fetal anomalies led by Dr Stacey Power Walsh found that there is a lack of accurate knowledge on FFA, its classification, diagnosis, survival, and supports available following a diagnosis of FFA.
  • An assessment of UCC students’ knowledge of FFA and TOPFA led by Dervla Devine highlighted a gap in university student knowledge in FFA and TOPFA.
  • A qualitative exploration of the experiences of volunteers supporting parents following a FFA diagnosis, led by Dr Stacey Power Walsh, found that volunteers felt comfortable in their peer support role to bereaved parents. However, there is a need for education and collaborative working between health care professionals and volunteers to assist them in supporting bereaved parents.
  • A qualitative interview study examining fetal medicine specialist experiences of providing a new service of TOPFA, led by Dr Stacey Power Walsh, highlighted the challenges that Fetal Medicine Specialists faced with the introduction of TOPFA, particularly in the absence of institutional support and lack of additional resources. They feared getting a diagnosis of a FFA wrong because of media scrutiny and the criminal liability attached to the legislation. The legislation was a challenge for them as it was unclear and open to interpretation regarding what constitutes FFA.
  • A qualitative interview study, led by medical student Peter Jackson towards the award of a Masters in Public Health, highlighted parents’ need for consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs following the legalisation of termination of pregnancy in Ireland.

Our impact

Informing training and education of health professionals

  • Dedicated session on TOPFA included in TEARDROP - Teaching, Excellent, pArent, peRinatal, Deaths-related, inteRactions, tO, Professionals, a half-day workshop designed to address the educational needs of health professionals involved in maternity and newborn care in managing perinatal death and pregnancy loss. Delivered since 2018. Read separate impact case study on TEARDROP.
  • In April 2022, Professor O’Donoghue presented on ‘Termination of Pregnancy for Life-Limiting Conditions’ at a study day webinar on Termination of Pregnancy, hosted by the Institute of Obstetricians & Gynaecologists and Royal College of Physicians of Ireland.
  • In March 2023, Professor O’Donoghue presented the latest research on TOPFA, outlining current challenges and future directions during a UCC Medical Graduates Association webinar on pregnancy loss delivered by the Pregnancy Loss Research Group.

Influencing policy and clinical guidelines

Increasing public awareness – media coverage


Research led by Peter Jackson around parents’ experiences of pregnancy following a diagnosis of fetal fatal anomaly has won awards at several conferences:

  • 5th All Island Children's Palliative Care Conference, Belfast, September 2022
  • UCC College of Medicine and Health Research Conference “from Molecules to People”, Cork, September 2022
  • Junior Obstetrics and Gynaecology Society Meeting, Dublin, November 2022.

Dr Stacey Power Walsh was awarded her PhD for her thesis “Experiences of pregnancy with major fetal anomalies” from UCC in July 2021. Stacey also received prizes for her PhD work:


Research from our Group highlights key areas for action for Termination of Pregnancy legislation reform, for healthcare policy and for improved clinical practice alongside enhancing training and education of health professionals. Our research continues to actively inform legislation reviews, clinical guidelines, staff training and education, and public awareness, making an impact to ultimately enhance termination of pregnancy care experiences for parents with a diagnosis of a FFA.

Professor Keelin O’Donoghue, Lead, Pregnancy Loss Research Group

For more information

Please contact:

Pregnancy Loss Research Group

Pregnancy Loss Research Group, Department of Obstetrics & Gynaecology, University College Cork, Fifth Floor, Cork University Maternity Hospital, Wilton, Cork, T12 YE02, Ireland,