Quels accompagnements à l'hôpital pour un enfant atteint d'amyotrophie spinale de type I et sa famille ?

The clinical care of a baby affected by a lethal disease often weakens medical teams and shakes their professional grounds. Regarding spinal muscular atrophy type I, the doubts depending on the uncertain prognosis can particularly make practices too standardized and therefore may modify or impair the support that families and patients need. Taking as example a real clinical situation, we'll show the difficulties that may appear during the various stages in the course of this disease, i.e. from the announcement of diagnosis until the death of the child has happened. Every decision to bypass these obstacles is an opportunity to create a therapeutic alliance between the family and the medical team. Families and patients need from professionals empathy, meaning comprehension and identification rather than following pre-determined strict protocols.