Edison’s Journey – An Account of the Continuum of Perinatal Palliative Care

Perinatal Palliative Care is a holistic approach to supportive and end-of-life care with the aim to ensure provision of the best care during pregnancy, childbirth and the newborn period when a baby has an identified fetal anomaly, or a newborn has an identified life-limiting condition. It is a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximising quality of life and comfort and include a formal prenatal consultation; development of a birth plan; access to other neonatal and paediatric specialties, as needed; and support and care during the prenatal, birth, and postnatal periods, including bereavement care.

Edison was the much loved and wanted fourth child of his parents Jacque and Nathan. Diagnosed antenatally with Hypoplastic Left Heart Syndrome, Edison’s parents chose to focus on his comfort and surrounding him with love for as long as they could. Sharing Edison’s journey and the beautiful 10 days he spent with his family, this presentation explores the many facets of perinatal palliative care, including the initial perinatal consultation with the Paediatric Palliative Care Service, exploring hopes and goals of care for Edison, formulating a birth plan and collaborating with the local hospital.

The presentation also showcases the coordinated approach to care across all sectors of health and community agencies to ensure Edison received optimum symptom management and he and his family were cared for and supported in their chosen place of care, which was to be at home. The support provided after Edison died will also be shared, including memory creation and the care taken so he could remain with his family for a further 3 days after his death. This presentation will be jointly presented by Edison’s Mum, Jacque, and Kerry Gordon, Paediatric Palliative Care Nurse Practitioner, who formed part of Edison’s care team.