Academic journal article Health Sociology Review

'She's Done Two and That's Harsh': The Agency of Infants with Congenital Conditions as Invoked through Parent Narratives

Academic journal article Health Sociology Review

'She's Done Two and That's Harsh': The Agency of Infants with Congenital Conditions as Invoked through Parent Narratives

Article excerpt

Infant bodies

In order to highlight the importance of the ongoing development of the infant's narra- tive in the context of biomedical intervention the views of parents on the agency of their child as expressed after surgery for congenital heart defects are presented. The infants referred to in the interviews had undergone cardiac surgery in a specialist children's hospital where a pro- gramme was introduced by the cardiac nursing staff, known as the Heart Beads Program. The programme was intended to facilitate under- standing the 'journey' of the child and their treatment in hospital by documenting each treatment event with a bead. The beads could be threaded on to a string to make a linear record of the child's journey in the form of a necklace. Parents responded enthusiastically to the pro- gramme and those interviewed indicated a desire to insert the child into a social narrative and rec- ognise the infant/child as expressing a desire and effort to live.

Infant bodies within medical discourses are subjected to medical surveillance and intervention in processes such as immunisation, weight moni- toring and correction of congenital conditions (Armstrong, 1995). There has been a great deal of medical research focussed on infant mortality and the development of new medical interventions such as Blizzard (2007) on foetoscopy and Casper (1998) on the creation of the foetus as patient. The focus on demographics in knowledge gather- ing discussed by Casper and Moore (2009) along with heroic accounts of medical breakthroughs have crowded out the stories and experiences of families grappling with an infant with a congeni- tal condition. These stories, often presented as ill- ness narratives, serve to 'return the experiencing, suffering human being from the periphery to the centre of medicine' (Hawkins, 1999, p. 13).

Infant surgery for congenital defects has become commonplace and progress is hailed and presumed to be an enormous benefit to the com- munity. One infant in 100 live births has a con- genital heart defect. It is not known how many foetuses are aborted when screening reveals a heart defect. One in 500 infants has hypoplastic left heart syndrome (HLHS) requiring three sur- geries between birth and 24-48 months of age. As reported in a trial of surgical techniques on infants with HLHS 549 infants 159 (29%) died within 12 months of surgery, 13 required a heart transplant and 377 lived (Ohye et al., 2010). We know little of the kind of lives these infants will go on to have, what impact the surgery has had on their development and what the impact on their families will be in the long run (Walker, Holland, Winlaw, Sherwood, & Badawi, 2006).

Medical technologies are used to promote foetal personhood (Landsman, 1998) giving an independent existence to the foetus and neonate. While the fact that the neonate can breathe independently and has its own heart beat is regarded as constituting independence, it nevertheless remains physically, emotionally and socially dependent for its survival. The identifi- cation of the neonate as independent has reper- cussions for the medical treatment of congenital defects (Casper, 1998). Treatment is presumed to apply to the infant as a separate entity with the parents having little or no choice but to sub- mit to the advice of medical professionals and limited involvement (Blizzard, 2007). Casper's (1998) work has shown the appropriation of the bodies of foetuses and neonates and the creation of subjectivities, as separate from their mothers in particular who are considered as little more than a body containing a foetus. Layne (2003) has highlighted the invisibility of mothers espe- cially after pregnancy loss and Landsman (2008) how motherhood for mothers of children born with a disability is diminished. While the infant is taken to be a person for medical purposes it is also considered passive with the focus often being the medical condition or nomothetic dis- ease and not the individual and significant others (Blizzard, 2007, p. …

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