Meeting report: Translating exercise research in dystrophinopathy to the clinic.

Infants born with some severe neuromuscular disorders are usually extremely hypotonic and weak and present with the inability to move, breathe, feed or communicate. What is unique about these conditions is that they are usually considered to have normal cognition in contrast to other infants, who present in a similar fashion but with an encephalopathy, where brain damage has occurred and there is little prospect of normal cognition. In order for these infants to survive, a medical intervention, usually in the form of airway support, assisted ventilation and tube feeding will be required. The question that often arises is whether it is in the infants’ best interest to continue to receive medical intervention. This question is almost always challenging and often the answer lies in drawing up a balance sheet of benefits and dis-benefits/ burdens of medical intervention. There is a wide body of literature addressing the exact nature and nuance of the best interest query which could lead to disagreements between treating clinicians and parents. Further difficulties in decision making may arise if there are also social, familial or religious dimensions to consider. This situation can exceptionally result in the conflicting parties making an application to the Courts for help in finding a way forward. In the last decade a number of high-profile cases have come before Court which have generated a considerable amount of public interest. The cases of Charlie Gard, Tafida Raqeeb, Pippa Knight, Alta Fixsler and Archie Battersbee have had major implications for case law and for paediatricians. A detailed review of these cases has recently been published in a Nuffield Council of Bioethics review by Kirsty Moreton.