Anencephaly

Anencephaly is an untreatable and terminal neural tube defect in which most of a fetus' brain, skull and scalp is missing. It affects approximately 1 in 1000 pregnancies globally (Cook et al, 2008) and although stillbirth is common, some affected babies can be born alive (Obeidi et al, 2010), which, among other issues, can lead to moral, ethical and legal debates regarding termination of pregnancy. Cook et al (2008: 307) note ethical concerns over late-term abortions, but detect ‘little controversy, where medicine is practiced according to professional secular principles, about late termination of anencephalic pregnancy.’

But how should health professionals engage with parents whose governments or religious beliefs forbid termination of pregnancy? Obeidi et al (2010) undertook their work in Ireland when termination of pregnancy was still illegal, and so participants received the recommended prenatal care from health professionals in preparation for birth. The authors also cited evidence, based on the experiences of couples elsewhere who chose to continue with pregnancy, that health professionals were unprepared to provide appropriate care for babies with anencephaly. Obeidi et al (2010) further identified a dilemma related to the timing of the induction of labour in mothers whose babies were viable: some authorities deem the early induction of labour of anencephalic fetuses acceptable, while others judge early induction as a form of termination, as the baby is often unable to survive for long outside the womb.

The absence of a termination of pregnancy option for life-limiting conditions in Ireland (until the referendum in May 2018) meant that health professionals had considerable expertise in caring for pregnant women whose babies were diagnosed with anencephaly. A study from O'Connell et al (2019), who were based in Cork, provided a moving perspective on the experiences of four women who continued with their pregnancies following an anencephaly diagnosis, which was received between 16 and 24 weeks' gestation. Two women described themselves as having religious beliefs, one identified as an atheist and another as a non-practising believer. Through semi-structured interviews, O'Connell et al (2019) determined the emotional effect of the diagnosis on mother; the decision-making process (between continuing pregnancy or travelling overseas for termination of pregnancy); the evolving relationship that the mother had with her baby; experiences that hurt and experiences that helped; and the lasting impact of the diagnosis.

When asked about the emotional impact of the diagnosis, women mentioned grief, shock, a loss of identity and sense of failure. All four women initially considered termination of pregnancy, and two mothers reported that they would have chosen it, had this been possible in Ireland at the time.

Significantly, this study by O'Connell et al (2019) acknowledged, for the first time in the literature, the level of initial rejection that women may feel towards their baby. For example, a woman known in the study as ‘Laura’ recalled saying,

Study lead author Orla O'Connell said:

Following the anencephaly diagnosis, relationships between the mothers and their babies evolved through a similar pattern: from initial rejection, to a meaning-making process that led to the emergence of a new loving and protective attachment, to the joy of meeting their baby and the pain of letting go. As ‘Laura’ commented:

Although some women will choose a termination of pregnancy if their baby has a life-limiting condition, many find that continuing to term and giving birth can be a life-enriching experience.