The health service has published Ireland’s first guide for people considering or undergoing a termination of pregnancy following a diagnosis of a fetal anomaly in an unborn baby.
A diagnosis of major fetal anomaly in an unborn baby is, for most parents, a sudden, complex and deeply distressing moment while the decision to end a pregnancy can be a uniquely complicated and painful experience, according to the HSE.
The booklet points out that around one in 50 unborn babies are found to have a major fetal anomaly, which is a condition that develops during pregnancy and is present in the baby or fetus before birth, seriously affecting the baby’s health, development or long-term wellbeing.
The HSE said while most pregnancies develop without major concerns, a small number are found to have a major fetal anomaly.
“Fetal anomalies are conditions that develop in pregnancy and are present in the baby before birth, seriously affecting the baby’s health, development or long-term wellbeing,” it said.
HSE chief clinical officer Dr Colm Henry said: “A diagnosis of fetal anomaly is often unexpected and can cause profound emotional and psychological distress for women and parents.
“At what can be an incredibly difficult and frightening time, the quality of the information, communication and support they receive can make a lasting difference. Today’s launch is therefore ultimately about how we provide care, how we listen to women and families, and how we continue to improve termination of pregnancy services in Ireland.”
The HSE said the booklet “aims to provide information about the diagnosis, pregnancy options, and the steps involved, as well as supports available. It also covers the legal and clinical aspects of navigating a diagnosis of fetal anomaly in the Republic of Ireland”.
This booklet was developed by the Pregnancy Loss Research Group in Ireland, in collaboration with the HSE’s National Women and Infants Health Programme (NWIHP), with the input of people with lived experience, advocacy groups including LMC Bereavement Support, and healthcare professionals.
It also draws on legal resources, guidelines, research and reviews.
The booklet points out some physical anomalies or developmental differences are very serious but are not immediately life-threatening.
This distinction matters because termination of pregnancy is not allowed in Ireland for conditions where the baby could potentially survive longer than 28 days after birth, even if there are significant health needs or disabilities anticipated.
Some English NHS hospitals accept patients from the Republic of Ireland for termination of pregnancy for fetal anomaly when the baby’s condition meets UK legal criteria under Ground C or Ground E.
Prof Keelin O’Donoghue, Consultant Obstetrician Lead, Pregnancy Loss Research Group, at UCC said: “The Termination of Pregnancy for Fetal Anomaly 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.”