Author:Pauline Herbst (University of Auckland)
Paper short abstract:
The diagnosis of the genetic condition MCADD medicalises newborn feeding, turning it into a site of moral decision-making. Already a space where morality, science, tradition and social practice explosively intersect, feeding becomes a medical solution that staves off serious complications.
Paper long abstract:
Medium-chain Acyl-CoA dehydrogenase deficiency (MCADD) is an inherited metabolic disorder of fat breakdown that was added to the New Zealand newborn screening programme in 2006. Infections, fasting or vomiting can lead to serious illness with a risk of sudden death. In addition to creating genetically 'disordered' subjects, the diagnosis of MCADD medicalises newborn feeding, turning breastfeeding into a site of moral decision-making. Already a space where morality, science, tradition and social practice explosively intersect, feeding becomes a medical solution that staves off serious complications so long as it is done every few hours. If for any reason the child can't feed, she will need to be hospitalised and fed either intravenously or via a nasogastric tube, a decision usually made by the parent. This paper examines the decision-making of 24 New Zealand mothers navigating the first fraught year of feeding a child with MCADD, revealing a constant tension between what was imagined as best for their child prior to diagnosis, such as exclusive breast-feeding, and post-diagnosis, through the lens of 'disorder'. It explores the moral dimensions of their interactions with the health system both in the lived experience of child-rearing (eg Plunket) as well as the uncertainty around when to hospitalize their children, who in comparison to others on the ward, look healthy and well to staff. These mothers feel a grave responsibility for the life of their children and weigh every parenting decision based on prioritising food intake; navigating a complex moral network of health systems, family and community.
Managing medical uncertainty