Making sense of the unexpected: neural tube defects in Ethiopia

Neural tube defects are severe birth defects with visible and devastating malformations in babies, and can lead to death before, during or soon after birth. Neural tube defects are preventable, and in many countries there has been an increasing ‘responsibilization’ of pregnant women in terms of taking folic acid before and during pregnancy to avoid these malformations in their babies. In low-income countries, many women are not in positions to plan pregnancies, access appropriate information and allocate scarce resources to avoid neural tube defects. Lack of compliance with biomedical management strategies remains a challenge in many places, and, in this paper, we turn the attention to local perspectives on neural tube defects in eastern Ethiopia, where there are high number of cases. Drawing on interviews and focus group discussions with mothers, community members, health workers and traditional birth attendants, we explore why the malformations of babies lead to stigma of their families and demonstrate how local forms of responsibilization impact the families of the babies born with neural tube defects.