The parents of 11-month-old Charlie Gard are dropping their request for the terminally-ill infant to die at home, a UK court heard on Wednesday.
Parents Connie Yates and Chris Gard are trying to assemble a team of doctors and nurses who can move Charlie from the hospital to a hospice so they can spend several days with their son before letting him die.
They will need the High Court’s permission to do that. The test will be whether Judge Nicholas Francis is convinced it’s in the child’s best interest, as British law requires.
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.
Grant Armstrong, the parents’ lawyer, said yesterday that the couple objected to the “brutality” of moving Charlie to hospice, only to have him die shortly after.
But Armstrong said Wednesday that the family has found a doctor with previous intensive care experience who would be able to oversee a team at the hospice.
Armstrong said the couple believes they can put a privately-funded nursing care plan in place, which would include some nurses from London’s Great Ormond Street Hospital (GOSH), where Charlie is currently being cared for.
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.
Charlie’s parents had sought court permission 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.
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 moving Charlie to hospice.