Parents want to take Charlie Gard home to die

The parents of terminally ill baby Charlie Gard on Tuesday accused a London hospital of preventing their son from coming home to die, the latest harrowing confrontation in a legal battle that has raised emotions far and wide.

Great Ormond Street Hospital’s lawyer told the High Court it had moved “heaven and earth” to allow 11-month-old Charlie to go home, but this was impossible for practical reasons.

The judge said transferring Charlie to a hospice for his last moments — a move supported by the hospital — appeared the most realistic option.

The plight of Charlie, who suffers from a rare genetic condition causing progressive brain damage and muscle weakness, has been at the centre of a bitter dispute between his parents and the hospital.

The case has triggered a debate on social media and in the press about whether doctors, judges or parents should decide a child’s fate. U.S. President Donald Trump and Pope Francis are among many people who have weighed in with views.

Staff at Great Ormond Street, a hospital so revered in Britain that it was featured in the opening ceremony of the 2012 London Olympics, have received death threats and abuse.

“Emotions are as high in this case as they could be in any,” said the presiding judge, Nicholas Francis.

He gave Charlie’s legal team until Wednesday to see if they could find an intensive care team willing to look after Charlie at his home or at a hospice for several days, in accordance with the parents’ wishes.

“I will make my final decision tomorrow unless something completely new comes up,” he said. A court hearing is scheduled for 1300 GMT on Wednesday.

Charlie requires a ventilator to breathe and cannot see, hear or swallow. His parents, Chris Gard and Connie Yates, resigned themselves to letting him die after the most recent set of scans showed his condition had deteriorated to the point no recovery was possible.

The couple want Charlie to be taken to their home or to the home of a close relative or friend for his last moments until his life support system is switched off.

Their lawyer, Grant Armstrong, told the London High Court that Great Ormond Street was placing “obstacle after obstacle” in the way of the parents’ wish.

The hospital’s lawyer, Katie Gollop, denied this.

“Nothing could be further from the truth,” she said. “The hospital has moved heaven and earth to make this possible for them.

The court heard that a team of two to three intensive care doctors and four to six intensive care nurses would be required along with the equipment, including a ventilator that could not fit through the front door of Charlie’s home.

“Charlie is a child who requires highly specialised treatment. His care cannot be simplified. It must be provided in a specialist setting by specialists,” Gollop wrote in a document setting out the hospital’s position for the court.

She said the hospital had searched “the length and breadth of the country” for an intensive care specialist willing to oversee the care at home, but in vain. This was partly because of the risk ofCharlie dying unexpectedly.

“That would be a disaster,” said Francis, as Charlie’s mother shook her head in disagreement.

The judge said it appeared the only realistic option was for Charlie to be taken to a hospice where his ventilation tube would be removed shortly afterwards. The parents had wanted four days with Charlie before his death, Gollop said.

Tuesday’s proceedings were the latest in an agonising series of court hearings.

Charlie’s parents had wanted to take him to the United States to undergo an experimental treatment never before tried on anyone with his condition, against the advice of Great Ormond Street doctors. Britain’s courts, backed by the European Court of Human Rights, refused permission, saying it would prolong his suffering without any realistic prospect of helping him.

The details of Tuesday’s hearing suggested that the relationship between the parents and the hospital had broken down completely. The hospital said the parents had rejected an offer of mediation.

“Today, palliative care consultants at the hospital have had a lengthy, difficult and (sadly but understandably in the dreadful circumstances) unconstructive meeting with the parents,” the hospital’s legal document said.

“There remains no agreed plan.”