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Termination of Pregnancy for Fetal Anomaly – booklet launch 2026
The HSE's National Women and Infants Health Programme (NWIHP), in collaboration with the Pregnancy Loss Research Group (PLRG), has launched a new resource for clinicians and people needing information about termination of pregnancy for fetal anomaly. Termination of Pregnancy for Fetal Anomaly provides accessible, evidence-informed information on clinical practice, legislation, care pathways and sources of support.
The booklet focuses on receiving a diagnosis of fetal anomaly in pregnancy and the decisions that may follow, which can be very difficult. It was developed from PLRG research, with input from people with lived experience and healthcare professionals, and includes direct quotations from research participants and people supported by peer organisations such as LMC Bereavement Support. It brings together information on diagnosis, referral to fetal medicine services, decision-making, care in the Republic of Ireland, care pathways outside the Republic in some circumstances, physical recovery, emotional wellbeing and follow-up support.
It also reflects research evidence on the emotional, practical and organisational complexity of care in this area, and the importance of clear information, follow-up support and multidisciplinary working. The quotations from people with lived experience and the commissioned artwork by illustrator Amy Lauren ensure that information is communicated in diverse ways.
The booklet is being showcased alongside two resources launched by the HSE in July.
- Termination of Pregnancy: Guide to the 2018 Legislation sets out the legal framework for termination of pregnancy in Ireland. It explains the main pathways under the Health (Regulation of Termination of Pregnancy) Act 2018 — early pregnancy care, risk to the pregnant woman's life or health, and conditions likely to lead to the death of the fetus — for both people seeking information and professionals involved in care and referral.
- Termination of Pregnancy Services in Ireland Report (2019–2025) is the first national report on the service since it began in January 2019. It sets out how provision has expanded — from 10 maternity units in 2019 to all 19 by 2025, and from 281 to 483 primary care contract holders — alongside notification data showing 46,861 terminations between 2019 and 2024. It also includes, for the first time, a profile of women who have used the service, drawn from pilot monitoring in maternity units.
Showcasing the three resources together matters for several reasons:
- People and clinicians often need legal and care information at the same time.
- National work has identified the importance of consistent information, stronger care pathways, and support for providers across maternity and fetal medicine settings.
- Reflecting on services since provision came into force helps clarify what is working and what can be improved.
By publishing them together, the HSE and partners aim to support more informed conversations and more consistent, compassionate care. The PLRG and NWIHP collaboration matters because it ensures the resources are grounded not only in law and clinical guidance, but also in Irish research on the real experiences of parents and professionals.
They also sit within broader national efforts to strengthen termination of pregnancy services and national information resources across Ireland, including ongoing work on fetal medicine standards, education and training, and continued service development across all 19 maternity units. The aim is that people, wherever they present for care, can access clearer and more consistent information at a very difficult time.
Alison Lynch, from LMC Bereavement Support welcomes this resource with:
LMC is delighted to see this booklet being published. It's vital for parents to have reliable, accurate and comprehensive information about the options and treatment protocols that are available to them. This allows them to make an informed decision about their healthcare pathway. Getting this information in a timely manner is crucial when life altering decisions have to be made when people can feel that they're under a time pressure.
Professor Keelin O’Donoghue, Consultant Obstetrician; Lead, Pregnancy Loss Research Group, UCC said:
The TOPFA booklet is a practical, compassionate guide for anyone affected by a diagnosis of major fetal anomaly who is considering, undergoing, or recovering from termination of pregnancy for fetal anomaly in Ireland. It can be used as a reference at different stages rather than read all at once, but aims to be a single, reliable Irish source that explains this entire pathway of care clearly and sensitively. We hope it also supports partners, families and healthcare professionals by bringing clinical, legal, emotional and practical information together in one resource.
The Termination of Pregnancy for Fetal Anomaly booklet was launched on 01 September by Dr Colm Henry, HSE Chief Clinical Officer at an event hosted by NWIHP at Dr Steevens' Hospital, Dublin.
Support and further information
- Pregnancy Loss Research Group: PLRG's central hub for research and support resources.
- Pregnancy and Infant Loss Ireland: A national hub for information and resources.
- National Women and Infants Health Programme (NWIHP): Resource base and development of clinical guidelines.
- LMC Bereavement Support: Peer support for people navigating a diagnosis of fetal anomaly, supporting people whether they decide to continue or terminate the pregnancy.
PDF versions of both national information resources are available online at pregnancyandinfantloss.ie and on the PLRG website.
Download links:
Gallery
L-R: Professor Keelin O'Donoghue (Lead, Pregnancy Loss Research Group), Dr Cliona Murphy (Clinical Director, NWIHP), Dr Aoife Mulally (HSE Clinical Lead for Termination of Pregnancy Services)
L-R: Dr Oana Marian (Postdoctoral Researcher, Pregnancy Loss Research Group, NWIHP), Rióna Cotter (Assistant Director of Midwifery, NWIHP), Professor Keelin O'Donoghue (Lead, Pregnancy Loss Research Group)
Dr Colm Henry, HSE Chief Clinical Officer
Professor Keelin O'Donoghue, Lead, Pregnancy Loss Research Group
Dr Oana Marian, Postdoctoral Researcher, Pregnancy Loss Research Group, NWIHP