"In January 2021, my partner and I were on fixed-term postdoctoral fellowships in Australia when life threw us a rapid sequence of curveballs. We hadn't planned on four children, but our third pregnancy became twins. Elio, one of our twin boys, was born with intestinal atresia: his small intestine wasn't connected to his large intestine. A day after birth, surgeons made a life-saving stoma."
"Six weeks later, while he was still in the neonatal intensive care unit (NICU), a biopsy revealed that he had total colonic Hirschsprung disease (TCHD). Elio's colon would never function, meaning that the stoma bag was going to stay for a few years. Living with TCHD entails chronic diarrhoea, vitamin supplementation and a constant risk of dehydration. Being in a neonatal care unit is hard at any time,"
In January 2021 two postdoctoral researchers in Australia experienced an unexpected twin birth with significant medical complications. One twin, Elio, was born with intestinal atresia and received a life-saving stoma a day after birth. A later biopsy diagnosed total colonic Hirschsprung disease, meaning the colon would not function and the stoma would remain for years. Living with TCHD involves chronic diarrhoea, vitamin supplementation and dehydration risk. Pandemic border closures prevented overseas relatives from helping. A parent stayed in hospital for months while the other managed older children, breastfeeding, long commutes and institutional leave arrangements.
#total-colonic-hirschsprung-disease #neonatal-intensive-care #pandemic-border-closures #fixed-term-postdoctoral-researchers #caregiving-and-career-balance
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