Antenatal testing and the subsequent birth of a child with Down syndrome: a phenomenological study of parents’ experiences

Abstract

The objective was to gain a deeper insight into the lived experiences of parents during antenatal testing for Down syndrome and the subsequent birth of their baby. A phenomenological research inquiry used unstructured interviews and thematic framework analysis. Conversations between parents and midwives about Down syndrome, when they occurred, were brief, functional and had a biomedical problem orientation. Antenatal screening failed to meet parents’ expectations of better preparation for birth. After birth, children’s ‘differentness’ rather than health needs was the main focus of care interventions. The inquiry revealed the ‘invisibility’ of the potential child with Down syndrome. Professionals in maternity care services must be equipped with appropriate knowledge about Down syndrome in order to better support parents. Such preparation must include a balanced view of the future of the child, consistent with the principle of reproductive autonomy. Appropriate support after birth is also essential in helping parents to adapt to their new situation.