'She's done two and that's harsh': The agency of infants with congenital conditions as invoked through parent narratives

摘要

The relationship of parents and infants is ruptured at birth in the context of urgent issues such as congenital heart defects. The infants referred to in 10 semi-structured interviews had undergone cardiac surgery in a children's hospital in Australia and were participating in a new programme known as Heart Beads instigated by the cardiac ward nurses. Within the biomedical context infants are often alienated from their parents and treated as isolated bodies. The paper discusses the social implications of an ill or deformed child and the role of narrative in addressing social demands and the problems faced by parents in infant intensive care contexts. It is argued that theorising the infant within a relational framework allows agency to be attributed to the infant and parents while also recognising the importance of the intimate social world and interactional context that it is expressed within. The paper draws on Nick Crossley's relational sociology to highlight the importance of the relational embodiment that encompasses infants within a social world preceding them and enveloping them. The narrative is developed by parents in order to facilitate the social expression and integration of their child and thus plays a particularly social role in the context of infant surgery, rather than serving to adjust the individual to new circumstances. Exploring the role of narrative in this social relational sense is important for bringing the mother and the family back into the context and survival of the infant both physically and socially.