Theme: Goals of Care

Regret re decision-making about interventions: “If we as parents center our child’s experience [not our fear of guilt], with every choice, I don’t see how we can go wrong.”

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Regret re decision-making about interventions: “If we as parents center our child’s experience [not our fear of guilt], with every choice, I don’t see how we can go wrong.”

Parents of a child with a rare genetic condition talk about centering their child’s experience over their own to ensure that he had the best life possible. They express how hard it was to be forced to make decisions on his behalf and the “central tenets” they came up with to guide them.