LONDON — British media are reporting that 11-month-old Charlie Gard, focus of a legal health battle, has died days before his 1st birthday.
Yesterday, the UK court presiding over the case of Charlie Gard made a decision on where the terminally-ill infant would die.
Charlie’s parents sought court permission to bring their bring their son home, just days after abandoning legal action over pursuing further treatment for the 11-month-old, who was on life support.
At stake was whether Charlie’s ventilation tubes would be withdrawn in the hospital, in hospice, at home soon after transfer or at home after a period of days.
Charlie suffered from an extremely rare degenerative condition called mitochondrial DNA depletion syndrome, which caused brain damage and left him unable to move his limbs.
London’s Great Ormond Street Hospital (GOSH), which was caring for Charlie, argued in court Tuesday that it had “moved heaven and earth” to fulfill the parents’ wishes, but said that no intensive care pediatric doctor in the country was able or willing to supervise his care at home.
Charlie had required invasive ventilation — a treatment where air is forced into the lungs — that can “only be provided in a hospital setting” with specialized management from medical professionals, the hospital said.
The hospital also said that Charlie’s ventilator would not have fit through the door of his parents’ west London home, and that the property’s stairs and corners would make it difficult to negotiate equipment through and would likely have required Charlie to be taken off the ventilator to get inside.
Instead, the hospital suggested the best course of action would be to move Charlie to hospice.
Grant Armstrong, the parents’ lawyer, said Tuesday that the couple objects to the “brutality” of moving Charlie to hospice, only to have him die shortly after.
Armstrong claimed the hospital had put up “obstacle after obstacle” to bringing Charlie home, and said that the couple were willing to fund all costs for out-of-hospital medical staff and had other suitable family properties if needed.
The court gave the family until noon on Wednesday to find a medical practitioner prepared to offer intensive care at home.
But the judge suggested moving Charlie to a hospice for his final days appeared to be the most pragmatic decision, according to Reuters.
The Associated Press and CNN contributed to this post.
