The terminally-ill infant Charlie Gard will be transferred from a hospital to a hospice and taken off life support unless an agreement for alternative arrangements is made by noon on Thursday, UK’s High Court has ruled.
Judge Nicholas Francis issued the order Wednesday after the boy’s parents Chris Gard and Connie Yates gave up their fight for him to die at home. “This has been a very very difficult decision to reach,” the judge said.
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.
Hospices focus on supportive care in the final stages of illness, and are not usually set up to accommodate keeping an infant in Charlie’s condition alive.
Charlie’s parents had hoped to assemble a team of doctors and nurses who could move him from London’s Great Ormond Street Hospital (GOSH), where he is being cared for, to a hospice so they could spend several days with their son before letting him die.
But they have not been able to find a medical team that would be able to supervise the intensive care the 11-month-old baby requires.
The hospital, which has been seeking court permission to let Charlie die since February, objected that a doctor proposed by the family on Wednesday lacked the right qualifications. He was a general practitioner with no intensive care experience and was not named, by court order.
Charlie’s parents requested 48 hours to search for another doctor, but the hospital objected.
It is “simply unacceptable that this drag on into a further week,” Fiona Paterson, a lawyer for the hospital, told the court. “It is for no gain.”
The hospital is seeking to complete the transfer by Friday. But the judge ruled that the hospice’s location and the date of transfer would remain private by court order.
Charlie’s mother left the courtroom visibly distressed before the judge read his decision.
Grant Armstrong, the parents’ lawyer, said Tuesday that the couple objected to the “brutality” of moving Charlie to hospice, only to have him die shortly after.
Charlie’s parents had sought court permission on Tuesday to bring Charlie home to die, and their lawyer claimed that the hospital had put up “obstacle after obstacle” to their plan.
The hospital argued 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.