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The experiences of parents of infants who require surgery in the first year of life are rarely recorded. Even after discharge from hospital, infants may require multiple outpatient visits to different specialists clinics and ongoing care requirements can have significant effects on the quality-of-life of parents and existing children.

This interview study explores parent experiences across a range of conditions (including exomphalos, congenitial diaphragmatic hernia and Hirschsprung’s disease) to fill this gap and provide a support resource for parents and relatives, and teaching and learning resources for health professionals on the website.