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A case of anencephaly: integrated palliative care

Abstract:

Following a diagnosis of anencephaly at the 24 week anatomy follow-up scan this case study exhibits an approach that integrates the primary, secondary and community services while maintaining the family unit at the centre of care, when an outcome to a pregnancy is not what was originally envisaged. Hope’s journey illustrates how integration of the multidisciplinary hospital team and community care can assist and support the family when planning a way forward, tailored to the family’s personal, physical, emotional and spiritual needs. After her mother’s full term pregnancy and vaginal birth after caesarean section (VBAC), Hope was discharged home seven hours after her birth as her parents wished for palliative care. She lived 14 hours, a life filled with love, dying in her family home as her parents wished. This pregnancy and outcome was a highly emotional journey. The care the family received was compared to that of a perinatal palliative care model and identifies strategies that could be adopted by maternity teams for similar cases in the future.

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anencaphaly, fetal abnormality, integrated care, perinatal palliative care