We have a poor understanding of rare congenital anomalies in babies that lead them to require surgery, and there is evidence that the birth prevalence of conditions such as gastroschisis and exomphalos is increasing worldwide. While advances in neonatal care and surgery are improving outcomes, there remain gaps in our knowledge. Surgical management is an under-researched area, as is the lived experience of their parents. What is it like to have an infant that requires such intense complex treatment during his or her early weeks and months? What are the long-term impacts on parents and the wider family?
As part of a British Association of Pediatric Surgeons-Congenital Anomaly Surveillance System (BAPS-CASS) study, in-depth narrative interviews were conducted with 44 parents living in the UK who had a baby who needed surgery during the first year of their life. Findings have been published on Healthtalk.org. This seminar will report on the long term impact and support needs of parents and families with children who are often affected by significant long-term morbidity.