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Caring for Children Who Have Severe Neurological Impairment: A Life with Grace


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This excerpt from Caring for Children Who Have Severe Neurological Impairment: A Life with Grace by Julie M. Hauer, M.D., offers guidance on the medical care and decision-making processes for parents and healthcare providers of children with severe neurological impairment (SNI). The book uses case studies to illustrate common challenges, such as managing seizures and pain, and explores the ethical considerations of various medical interventions. A significant focus is placed on balancing the potential benefits of treatments with the risks of harm and the importance of prioritizing the child's comfort and quality of life. The text also addresses the emotional toll on families and emphasizes the need for a comprehensive care team, including medical specialists and support services. Ultimately, the book advocates for a shared decision-making model that respects the parents' knowledge and values.

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