Dimensions of Exclusion in the Lived Experiences of Adult Survivors of Childhood Liver Transplant: A Micro-Analytic Perspective

The first paediatric liver transplants were performed in the early 1980s and continue today, saving thousands of children’s lives. Underlying syndromes, the transplant surgery, comorbidies and side effects of medication leave young people looking and feeling ‘different’ from their peers, especially in childhood. Through analysis of in-depth interviews with 27 now-adult survivors of the first cohort of childhood liver transplant recipients in Europe, we take a micro-analytic perspective in reporting how the processes of feared, felt, and enacted exclusion began in early childhood for this group. Exclusion through liver transplant is an additional intersectional dimension to more recognized societal exclusions such as age or gender, and appears to be fluid throughout the lifecourse. Adapting Goffman’s work on stigma and presentation of the self, we see that problems of exclusion are only slowly resolved in a number of social role interactions, where others appear to feel free to comment on the appearance of individuals’ bodies. For example, felt exclusion of schoolchildren often occurred through physical education, where the transplant scar could be observed unless the child learnt to hide their body in communal changing spaces. Learning how to present ones’ identity to others continues throughout the lifecourse. Narrative restarts, such as changing school or employment, appear a common way to ‘pass’ by losing the identity of a liver transplant recipient. However, this strategy is fragile, being contingent on the medical history not being uncovered. Positively revealing oneself as a liver transplant recipient was reported to result in inclusionary practices more as an adult rather than a child. For most, a sense of inclusion appears to be reached by this ‘new’ ageing population only through growing older: the understanding that everybody has ‘differences’ and that being ‘normal’ is something not closely defined for self or others.