Pediatric Stroke: One Mother’s Story

In this article, a mother whose young child experienced a stroke will discuss her experience navigating the medical, rehabilitation, educational and social systems following the child’s stroke and resulting disabilities. To assist life care planners and health professionals, an interview was conducted with this mother who has interacted with these various systems for 14 years. The interview provides a firstperson account of being a parent of a child who sustained an unforeseen insult which resulted in the need for various health interventions and how the child’s needs have changed over time. Someone in the United States experiences a stroke every 40 seconds (National Center for Chronic Disease Prevention and Health Promotion, Division for Heart Disease and Stroke Prevention, 2020). A stroke occurs “the blood supply to part of your brain is interrupted or reduced, preventing brain tissue from getting oxygen and nutrients” (Mayo Cinic, 2019, para. 1). While the majority of individuals who experience a stroke are adults, strokes also occur in children, and are termed pediatric stroke. Pediatric stroke remains one of the top ten causes of death in children between the ages of 1 and 19 in the United States (National Center for Chronic Disease Prevention and Health Promotion, Division for Heart Disease and Stroke Prevention, 2020). Like many conditions, pediatric stroke can occur at different times and may manifest in various ways. In fact, Ferriero et al. (2019), note that there are 28 different ways to characterize a pediatric stroke. A pediatric stroke can be classified as neonatal (occurring from 28 weeks’ gestation to 28 days of life post-birth) or childhood (28 days to 18 years of life) and can be categorized as either ischemic or hemorrhagic. Regardless of when the stroke occurs, lifelong impairments resulting from the event can be significant and substantially impact the child’s cognitive, behavioral and emotional wellbeing. Family systems, caregivers and society all feel the effects of a pediatric stroke. For a recent comprehensive review of the work of leading researchers in the field who synthesized existing evidence on evaluation, causes, and outcomes of pediatric stroke, the reader is referred to Ferriero et al. (2019). For purposes of this article, one mother will tell the story of how pediatric stroke affected her daughter, her role as a mother and her family.