“Heroic Medicine” in the Management of a Child with Spinal Muscular Atrophy Type 1: A Fair Choice of Treatment?

Abstract

Medicine is a rapidly changing field. The use of new drugs has given hope for patients’ survival and comfort for the family, especially in cases of children with life-limiting conditions. This has influenced the clinical decision on the options of care and treatment by either the caregivers or healthcare professionals. Medical management for these patients is threaded on many ethical discussions to determine the best choice for these patients. We illustrated a case of a baby with spinal muscular atrophy (SMA) type 1 who was started on a new medication, leading to a renewed hope for the family but a challenging task for the managing team to decide on the highest ceiling of care for the patient.