Expectant Parents, Expecting Perfection: Constructing Down's Syndrome in UK Antenatal Care

In the UK, expectant parents are offered screening for Down’s syndrome, an incurable chromosomal condition, as part of routine antenatal care. Drawing on an ethnography of two antenatal clinics, I explore how the prospect of Down’s syndrome is interpreted and negotiated by healthcare professionals and expectant parents during screening consultations. The potential diagnosis of Down’s syndrome, despite the condition being recognised by professionals as “compatible with life”, is confined within universalising discourses such as “risk”, “problem”, or “abnormality” which not only construct Down’s syndrome as a detrimental pregnancy outcome (the common vernacular of risk, in particular, becomes synonymous with danger or threat), but also imposes a collective category which masks the considerable variation of the condition. By drawing attention to the mundane interactions and materiality (e.g. booklets, posters, architecture) of the clinic and by considering diagnosis as both a category and process, I capture how this framing of Down’s syndrome structures, and is further embroiled in, cultural ideologies around perfection/imperfection and normality/abnormality. This creates a range of affects including producing self-blame among expectant parents, though particularly expectant mothers, who are enacted - within a neoliberal era of "total motherhood" (Wolf 2013) - as individually responsible for their unborn child’s welfare and who may have their maternal identities disrupted and shifted should they not produce a “perfect child”. Nonetheless, I ultimately reveal how a diagnosis of Down’s syndrome, before being fully established or even suspected, is demarcated as an emotional tragedy and future family disruption in the early stages of antenatal care. I conclude by reflecting on what this focus on one aspect of the reproductive process can contribute to the sociology of diagnosis and, at a general level, to exploring the tensions which develop once medical technologies intersect with the complicated world of Down's syndrome.