The UK court presiding over the case of Charlie Gard will make its decision Wednesday on where the terminally-ill infant will die.
Charlie’s parents are seeking 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 is currently on life support.
At stake is whether Charlie’s ventilation tubes should be withdrawn in the hospital, in hospice, at home soon after transfer or at home after a period of days.
Charlie suffers from an extremely rare degenerative condition called mitochondrial DNA depletion syndrome, which has caused brain damage and left him unable to move his limbs.
London’s Great Ormond Street Hospital (GOSH), which is 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 requires 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 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 require 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.
Justice Francis, who is presiding over the case, appeared to agree that a hospice may be the most pragmatic option for Charlie since they are specifically set up for end-of-life situations, prompting him to ask what the objection to a hospice would be.
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.
“I am sensing that timing is a lot of the problem here,” said Justice Francis. “It now seems to hinge partly on how long parents want to keep Charlie alive at home.”
The court gave the family until noon on Wednesday to find a medical practitioner prepared to offer intensive care at home.
