Background The RCPCH and the Nuffield Council of Bioethics provide guidance on making critical care decisions on withdrawal of intensive care. BLISS also provides guidance for families to work in partnership with professionals when making critical decisions.
Clinical case Following an uneventful pregnancy, a baby boy was born at 30 weeks gestation to non-consanguineous parents. He was profoundly hypotonic with respiratory distress at birth. He remained ventilated for poor respiratory effort in the weeks following delivery. He failed attempts at extubation. He continued to have paucity of movement. He underwent extensive investigations for hypotonia and was reviewed by external specialists. His clinical picture suggested an extremely poor prognosis. Following extensive discussions and multidisciplinary meetings it was felt that it was not in the baby’s best interest to continue with intensive care. Despite prolonged counselling of the parents over weeks regarding palliative care, they insisted on continuing intensive care. They sought an independent neonatal opinion through their solicitor. The opinion of the independent external professional was in agreement with our assessment. Genetic testing was subsequently positive for congenital myotonic dystrophy. Parents finally consented to withdrawal of intensive care at day 64 of life and he died shortly after extubation.
Conclusion Critical care decision on withdrawal of intensive care can be a very traumatic experience for families. It is essential to follow the guidance available. As paediatricians we are advocates for the baby but at the same time we have to be empathetic and considerate to the sentiments of the family.
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