Anencephaly; the maternal experience of continuing with the pregnancy. Incompatible with life but not with love

Abstract Objective As advances in prenatal diagnosis increasingly enable detection of life-limiting conditions, end-of-life care may start before birth. Termination of these pregnancies may have been default management, but in the Republic of Ireland, where termination is not a legal option, skilled experience in caring for mothers who continue their pregnancies has developed. This study examines the lived experience of four such mothers. Method A qualitative study was designed using interpretive phenomenological analysis, which examined the maternal experience of continuing pregnancy with a prenatal diagnosis of anencephaly. Four mothers participated in semi-structured interviews on their experience of pregnancy and delivery of a baby with anencephaly. Results A profoundly emotional journey represented an adaptive grieving process, which culminated in rich experiences of transformative growth for all the parents. The parents’ relationship with their caregivers facilitated this process and the development of a meaningful parenting relationship with their babies. This positive finding coexists alongside a parallel experience of ongoing deep sense of loss and sadness. Conclusion Perinatal palliative care for those with a prenatal lethal diagnosis is a positive life experience for some mothers. The role of relationship with healthcare professionals is vital to the process and consideration must be given to a comprehensive multi-disciplinary team approach.