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Paper short abstract:
Some of the rare inborn metabolic disorders entail a risk of decompensation leading to death or brain damage. An analysis of parenting and care of children with those conditions renders visible an ontological notion of child's chronical instability.
Paper long abstract:
With the introduction of a novel technique of tandem mass spectrometry to many countries' newborn screening programs, children with a group of rare errors of metabolism (fatty acid oxidation disorders and organic acidemias) can be diagnosed early, often before symptoms appear. Nonetheless those conditions remain incurable and carry the risk of metabolic decompensation leading to death or brain damage.
The care of those conditions consists mostly of relatively well defined dietary regimen. Its main problem is the enactment of a specific notion of vulnerability of the child's condition by medical personel and families. The parents and doctors need to treat as severely sick children that otherwise do not differ from their healthy peers (common infections, teething, etc. require hospitalization).
The paper examines the ways doctors and parents enact that vulnerability in differentiated socio-cultural and healthcare contexts of Poland and Sweden, from instalment of specific diagnostic techniques to assess a child's state of health (glucose level, creatine kinase measurements, arterial blood gas test) to various metaphorical elaborations of child's status (parents living with a "bomb in backpack" or children a transformative superhero - Hulk - inside their bodies, ready to blow/transform at any moment).
Although a notion of vulnerability seems to be a constant component of notions of childhood (Sheper-Hughes 1992, Christensen 2000), the paper raises the question of whether an ontological notion of "chronical instability" (Vilaça 2005) could prove useful for a description of the "version" of bodiliness and personhood that biomedical screening for rare metabolic diseases makes possible.
Rethinking margins through personhood
Session 1 Wednesday 22 July, 2020, -