6675 Collaborative management of suspected anencephaly as part of perinatal palliative care
ObjectivesWe describe two recent cases managed through the West Midlands Perinatal Palliative Care Service (WMPPCS), and in doing so to share the learnings our teams had from these rare cases.MethodsThis is a case series review of suspected anencephalies diagnosed antenatally, who were referred to the WMPPCS from January to September 2023.ResultsAntenatal ultrasound diagnosed anencephaly in each case, one was referred antenatally to the WMPPCS. In each case the baby was born in a District General Hospital, and after around 72 hours of survival the WMPPCS was contacted for input and support to consider discharge as the babies were feeding and stable without respiratory intervention. Discharge planning included symptom management plan, community nursing connection, anticipatory prescribing, advance care plan and planning follow up.In the first case discharge home was coordinated by palliative care services with collaboration between hospital, hospice and community teams. This baby had a large mass extending from the incomplete posterior cranium (occipital encephalocoele), which over days at home became difficult to manage. Difficulties included discomfort, keeping the wound clean, odour, distress of family and distress of community teams providing clinical support. Neurosurgery team was able to support admission at the children’s hospital. Further imaging confirmed presence of cerebrum, excluding ancephaly. Following careful multidisciplinary discussion with family, encephalocoele and skin defect closure was performed, with no complication. This baby continues to be well at home now at six months of age, grateful for this intervention.The second case had been seen antenatally by the WMPPCS service, but an expectation of early death led to a delay notifying the team after the birth of this baby. At initial review with palliative care, based on the previous case, dressing recommendations were provided and discussion with neurosurgery occurred to consider options in care. Family were grateful to feel teams were actively managing the baby, particularly as they were concerned about comfort related to the open wound, and after multidisciplinary counselling around this went to discuss as a family. Unfortunately this baby died at 6 days of age before further progress could be made.ConclusionAlthough both of these babies were diagnosed as anencephaly during pregnancy, both were subsequently born with open encephalocoeles. The distinction is important because encephalocoeles are associated with higher survival rate. Appropriate management of the open tissue reduces risk of fulminant meningitis, facilitates positioning and nursing, thereby maximising comfort and minimising distress to families and treating services. Retrospectively, fetal MRI would have helped diagnosis, prognosis and family counselling. These cases were a valuable reminder to approach babies with poor prognoses with an open mind as to the diagnosis and their needs. The first case provided valuable learning that led to earlier collaborative planning for the second baby, and earlier institution of best practice dressing management.
Read more