Neonatal and obstetric consultants, midwives, nurses and parents gathered on Wednesday 15th February in The Pillar Room in the Rotunda Hospital to highlight and discuss perinatal palliative care in the Irish maternity service.

The day-long session invited talks from a wide breadth of experts and healthcare professionals, as well as parents who gave their valuable time to speak about their perspective and their experiences with perinatal loss.

Perinatal palliative care is an active, total, holistic approach to care, focused on enhancing the quality of life of the baby and their family while recognising potential or inevitable death, and should be offered from the time of diagnosis, whether before birth (antenatally) or as a newborn (neonatally).

There is an average of 60-70,000 births in Ireland every year, and unfortunately 7 in every 1,000 pregnancies are complicated by perinatal death.

During the day, there was an emphasis on the need for continued promotion and development of the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death, launched by the HSE in August 2016. Perinatal Palliative Care is a relatively new speciality emerging from neonatology. The strengthening of national supports and prioritisation of continuity of services in maternity hospitals around the country is of vital importance.

Dr Nick Embleton, Consultant Neonatal Paediatrician, Newcastle upon Tyne Hospitals, spoke to the gathered crowd about The Butterfly Project, a research and education project designed to support parents who have lost a baby from a multiple pregnancy. Multiple pregnancies carry an increased risk of adverse outcome compared to singleton pregnancies. The Butterfly Project has developed information leaflets, education packages and Butterfly cot cards which are shared with hospitals to educate staff, and promote awareness of the challenges parents’ face.

During the mid-morning session, Eleanor Curran and Shane Ó Foghlú spoke about their two sons, Aidan and Donnacha, who sadly passed away shortly after being born at 23 weeks in the Autumn of 2015. To remember their sons, and to help other parents in a similar situation, they founded Aidan and Donnacha’s Wings to fundraise for the Ceramic Hand and Foot Prints Initiative. This Initiative enables the Rotunda Hospital to present every bereaved parent with a ceramic, framed print of their baby’s hand and foot prints.

Additional discussions and presentations included a debate on the ethical issues surrounding decision making at the limits of viability, hosted by Prof. Eugene Dempsey, Neonatal Consultant, Cork University Maternity Hospital and Anna Curley, Neonatal Consultant, National Maternity Hospital, and a self-care session in the afternoon, outlining tools and methods to help healthcare professionals deal with their own experiences and feelings when perinatal loss occurs.

Jane Dalrymple, Clinical Midwife Specialist in Fetal Medicine at the Rotunda, also, presented on the topic of Prenatal Diagnosis of Fetal Anomalies, and Christina Kilpatrick, Neonatal ICU Nurse from the Rotunda Hospital spoke about the importance of Memory Making and the role of healthcare professionals in facilitating this at the time of perinatal loss.

Prof Fergal Malone, Master of the Rotunda Hospital, said “In this era of increasingly complex medical care and when the thresholds of viability are being constantly challenged, it is vitally important that multidisciplinary teams are formed and adequately resourced to provide care to families who are facing the tragedy of perinatal loss. Additionally as prenatal diagnostic capabilities increase, it is more likely that we will be faced with caring for families who are dealing with the impending loss of baby from a congenital malformation. The multidisciplinary range of speakers at today’s conference, including the voices of patients, very ably demonstrated the pathway forward for delivering effective perinatal palliative care in Ireland into the future. We hope that sufficient resources to meet the recently published national standards will be provided to enable further development of this crucial service.”

For more information about perinatal palliative care, or this event, please contact Marie Lynch at marie.lynch05@gmail.com