The end of the 'experiment': positioning children with severe liver disease as potential survivors of pioneering liver transplantation

This chapter examines the construction, portrayal and experience of the first cohort of seriously ill children who could potentially be rescued through pioneering liver transplantation during the 1980s and early 1990s. It considers how these children were brought into existence in various representations through texts and images that both simplified what they represented yet also represented them as real (Dyer 2013; Gittins 1998). The chapter draws on a range of historical and contemporary accounts and memoirs of those working in the media and transplant fields. It considers the material, social and personal representations of the child (Gittins 1998) in examining how the child was variously understood as being at imminent threat of death from severe liver disease, an experimental project of the medical profession, a sentimental being with a personal narrative to tell, and a miracle of survival. Although at that time the child’s own voice was absent, the chapter also considers how these childhood selves are remembered through anonymised data from the surviving now-adult UK cohort members, their clinicians and journalists. They are the adults that were hoped-for and imagined, yet not guaranteed – the outcome of children who had a potential capacity for transformation (Castañeda 2002). Interviewed up to 30 years later as part of a larger study that aimed to understand the lived experience of this cohort, survivors reflected on their memories of childhood and growing up with a severe medical condition that, until that point, was untreatable (Lowton et al. 2017). Their accounts juxtapose the ‘rational’ approach of medicine and epidemiology to the individual child and the population of children as being ‘at risk’ (Swadener and Lubeck 1995) and the media’s sentimental narrative of the individual child.