Conflicts in Best Interest; Infants with severe neuromuscular disorders presenting to UK Courts

Infants with severe neuromuscular disorders, presenting a birth, are often unable to move, communicate, breathe, and feed. Unlike infants with severe birth asphyxia and cerebral palsy, these neuromuscular conditions are often associated with presumed normal cognition. Supporting these very severely affected infants and maintaining life through medical intervention or re-orientating care to palliation is often debated, and decision-making can be extremely challenging. Although guidelines exist to help navigate this process (Nuffield Council of Bioethics and Royal Collage of Paediatrics guidelines) deciding what is in the child's best interest is fraught with difficulties. This article explores some of the unique issues that arise in infants with severe neuromuscular conditions and illustrates the challenges in determining best interest for these patients, using some of the cases in the legal literature and the authors personal experience.