Fatal fetal anomalies

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 child mortality.

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

The Eight Amendment prevented termination of pregnancy for FFA in Ireland prior to repeal and the subsequent enactment of the Health (Regulation of Termination of Pregnancy) Act, 2018, legalised termination of pregnancy in Ireland for the first time. Following confirmation of a FFA prenatally, parents are faced with decisions concerning the remainder of the pregnancy, giving birth and seeing their new-born baby, or choosing termination of pregnancy.

Our research in this area

Incidence of fetal anomalies
Lived experiences of pregnancy with major fetal anomalies
Perinatal palliative care
Policy discourse
Public awareness of fetal anomalies
Termination of pregnancy for fetal anomaly

Key publications

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Category	Category	Keywords	Year	Title	Abstract	Actions
Book chapter	Book chapter	Bereavement care, Fatal fetal anomaly	2025	Delivery of unwanted news: diagnosis and assessment of needs		More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly, Fetal anomaly, Termination of pregnancy, Termination of pregnancy for fetal anomalies	2023	The outcome of trisomy 18 pregnancies following the legalisation of termination of pregnancy	Our study of Trisomy 18 in pregnancy found that earlier referral to fetal medicine services enabled decision-making around whether to terminate or continue pregnancy. The findings support universal access to first trimester prenatal aneuploidy screening and both care options.	More details Read publication
Journal Article	Journal Article	Fetal anomaly, Prenatal screening	2024	Pregnant people's views and knowledge on prenatal screening for fetal trisomy in the absence of a national screening program	While pregnant women in Ireland have reasonable understanding of the interpretation of non-invasive prenatal tests for fetal aneuploidy, most were unaware of screening options. A national prenatal screening programme, including education on fetal aneuploidy, is needed.	More details Read publication
Journal Article	Journal Article	Audit / Service evaluation, Fetal anomaly, Termination of pregnancy, Termination of pregnancy for fetal anomalies	2023	Fetal anomaly diagnosis and termination of pregnancy in Ireland; a service evaluation following implementation of abortion services in 2019	Our service evaluation of fetal medicine clinics in two tertiary maternity hospitals between 2019-2021 emphasises the impact of legislative barriers to abortion care–and the need for policies and services that support women's access to termination of pregnancy–for major fetal anomalies.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly, Perinatal palliative care, Termination of pregnancy for fetal anomalies	2023	Fatal fetal anomaly: Exploring experiences of women and their partners	Parents with a diagnosis of fatal fetal anomaly need consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs.	More details Read publication
Book chapter	Book chapter	Miscarriage, Perinatal palliative care, Pregnancy loss, Spirituality, Stillbirth, Termination of pregnancy, Termination of pregnancy for fetal anomalies	2022	Perinatal death: Complex and nuanced life, love and loss	Parents are faced with complex ethical decisions following a diagnosis of FFA. For some, the most compassionate approach will include termination. A palliative care approach & comprehensive bereavement care is proposed for all babies diagnosed with a life-limiting condition.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly	2022	Dating ultrasounds are fundamental to modern obstetric care	Dating ultrasounds confirm viability, pregnancy number and due date. These factors are the basis of antenatal care. This study reinforces the need for routine scanning of all pregnancies in the first trimester.	More details Read publication
Book chapter	Book chapter	Bereavement care, Fatal fetal anomaly, Perinatal palliative care, Termination of pregnancy for fetal anomalies	2022	Birth when life is short	Birth When Life is Short – a short summary of the positive trajectory of the development of bereavement care in pregnancy loss in Ireland.	More details Read publication
Book chapter	Book chapter	Bereavement care, Perinatal palliative care	2021	Perinatal palliative care	Perinatal Palliative Care provides for optimal holistic care of a baby and family following a life-limiting diagnosis. Models of planning & care are provided to provide optimum comfort for the baby, mother & family.	More details Read publication
Journal Article	Journal Article	Awareness / Knowledge, Fatal fetal anomaly, Perinatal palliative care, Termination of pregnancy	2023	Critical discourse analysis on the influence of media commentary on fatal fetal anomaly in Ireland	There are significant misrepresentations in the information being delivered to the public on fatal fetal anomalies. Healthcare professionals need to analyse information available to the public and engage in media literacy and to develop these skills in their patients.	More details Read publication
Journal Article	Journal Article	Bereavement care, Experience, Fatal fetal anomaly	2021	Experiences of volunteers supporting parents following a fatal fetal anomaly diagnosis	Volunteers feel 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.	More details Read publication
Journal Article	Journal Article	Experience, Fatal fetal anomaly, Staff support, Termination of pregnancy	2021	Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study	The implementation of termination services for fatal fetal anomaly is complex, challenging and requires institutional support.	More details Read publication
Journal Article	Journal Article	Neonatal death, Pregnancy loss, Stillbirth	2020	Education priorities for voluntary organisations supporting parents experiencing perinatal loss: a Delphi survey	A standardised approach is necessary to develop an education day that is responsive to the learning needs of volunteers supporting bereaved parents.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly, Perinatal mortality	2020	The incidence of fatal fetal anomalies associated with perinatal mortality in Ireland	Only 42% of perinatal deaths could be classified as a fatal fetal anomaly in accordance with the Health (Regulation of Termination of Pregnancy) Bill 2018 highlighting the complexity of these cases/multiorgan system anomalies.	More details Read publication
Journal Article	Journal Article	Bereavement care, Experience, Fatal fetal anomaly	2019	Anencephaly; the maternal experience of continuing with the pregnancy. Incompatible with life but not with love	Anencephaly, a fatal fetal anomaly in pregnancy, is devastating for parents and termination is often considered best management. Continuing the pregnancy before saying goodbye may be a healing and positive alternative to early termination for some women.	More details Read publication
Journal Article	Journal Article	Awareness / Knowledge, Fatal fetal anomaly, Termination of pregnancy, Termination of pregnancy for fetal anomalies	2019	An assessment of UCC students’ knowledge of fatal fetal anomaly and termination of pregnancy for fetal abnormality	Our study highlights a gap in university student knowledge around fatal fetal anomaly (FFA) and termination of pregnancy for fetal abnormality (TOPFA). More readily available, and accurate, public health and college education campaigns are needed.	More details Read publication
Journal Article	Journal Article	Awareness / Knowledge, Fatal fetal anomaly, Termination of pregnancy	2018	An assessment of the general public's knowledge of fatal fetal anomalies	There is a lack of accurate knowledge on fatal fetal anomaly, its classification, diagnosis, survival, and supports available following a diagnosis of fatal fetal anomaly among the general public. This highlights the need for improved health information about fatal fetal anomaly.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly, Pregnancy loss	2017	Maternity ultrasound in the Republic of Ireland 2016; A review	This study highlights the lack of development in Irish maternity ultrasound services over the last decade. Substantial investment by health care policy makers is urgently needed.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly	2013	The natural history of pregnancies with a diagnosis of Trisomy 18 or Trisomy 13; a retrospective case series	This large series of pregnancies with trisomy 13 and trisomy 18, in a setting where termination of pregnancy was unavailable, describes the natural history of these trisomies with useful information for pregnant women and healthcare professionals.	More details Read publication
Journal Article	Journal Article	Fatal fetal anomaly, Termination of pregnancy for fetal anomalies	2010	The natural history of anencephaly	The natural history of anencephaly is described in a cohort of continuing pregnancies.	More details Read publication

Related policy briefs

Experiences of pregnancy with major fetal anomalies

Related projects

Experiences of pregnancy with major fetal anomalies

Impact case study

Termination of Pregnancy for Fatal Fetal Anomalies

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Professor Keelin O’Donoghue
Peter Jackson
Dr Kristin Kelly
Dr Sarah Kennedy
Dr Hadas Miremberg
Dr Caoimhe Ni hÉalaithe
Dr Daniel Nuzum
Orla O’Connell
Dr Stacey Power Walsh

Pregnancy Loss Research Group

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Fatal fetal anomalies