Abstract:We report the progress of an 8-year-old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision-making in SMA type 1.

We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory failure. Mechanical ventilatory support can prolong life, but the child's quality of life is highly debatable. We discuss the appropriateness of initiating and continuing intensive care for this child and others in a similar position.

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Severe childhood obesity and its associated comorbidities are increasing in prevalence. Extreme childhood obesity may be viewed as a mirror image of severe non‐organic failure to thrive. Parental neglect may be a causative factor in both circumstances. When suspicion of parental neglect arises, health care professionals may have both an ethical obligation and a statutory duty to notify child protection services. Guidelines on the point at which medical practitioners should seek state assistance in cases of severe childhood obesity would be helpful, not only for medical practitioners, but also for child protection services.