Appreciating the Abilities of Children With Severe Neurologic Impairment

Maria was a 5-year-old girl with lissencephaly admitted for status epilepticus and benzodiazepine infusion to the PICU.As her medications were weaned, her family and the clinical team became misaligned about her baseline neurologic status.Specifically, the medical team thought that Maria was interacting in the way they expected for a child with her presentation and imaging studies, but her family felt that she was distant, uncomfortable, and ill.