Charlie Gard: still no agreement over baby’s final days

The terminally ill baby Charlie Gard will be transferred to a hospice to spend his final hours, after his parents abandoned a fight to take him home to die.

Connie Yates and Chris Gard had hoped to take their son, who has a rare genetic condition, home to spend his final hours as their “last wish”.

But they ran into opposition from Great Ormond Street hospital in London, where Charlie is on life support, which said that because of the difficulties of providing invasive ventilation at home and the potential for problems, that would not be possible.

At the high court on Wednesday, the parents said they would instead seek to move him to a hospice, hopefully for “a week or so”. The hospital, however, said even that would require a 24/7 intensive care team at the hospice, which it was unable to source. It has suggested that he should be removed from life support within hours of being transferred to a hospice.

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The judge, Mr Justice Francis gave the parents until Thursday to find a team that could support Charlie for the days they are looking to spend with him at a hospice.

“Unless by 12pm tomorrow [Thursday] the parents and guardian and Great Ormond Street hospital can agree alternative arrangements, Charlie will be transferred to a hospice and extubated shortly thereafter,” he said.

He added: “It seems to me the time has come when a decision has to be taken to a very, very sad conclusion.”

The judge said he envisaged Thursday’s proceedings being “the final hearing”, in a case which has been going through the courts for five months.

The details of when the transfer and removal of life support take place were discussed while journalists were removed from the court but earlier, Fiona Paterson, representing the hospital, said in open court that “it should be Friday”.

After the private discussions on the details had taken place, Ms Yates repeatedly shouted at the guardian representing Charlie as others filed back into court: “What if it was your child?” and “Hope you’re happy with yourself”. She then left the court in tears.

Facebook appeal
Afterwards, an unnamed family friend said: "The hospital have set the bar so high that in terms of clinical team for Charlie's end of life nothing seemed good enough for [the hospital]. The reality is Charlie is very stable, not in pain and rarely needs a doctor. It is therefore difficult to understand why Charlie could not die at home. All he needs is a ventilator which pumps room air into his lungs.

“It is extraordinarily sad that there’s been so much fuss about him dying at home. Connie and Chris have conceded a hospice but it was not their first choice. They will be devastated they have not been granted their final wishes as parents.”

The family later put a message on Facebook appealing for a paediatric intensive care consultant to come forward before 12pm on Thursday. It said: “Please only email if you can help us! We need some peaceful time with our baby boy.”

Earlier, Ms Yates’s hopes of being able to take Charlie to the hospice for an appreciable period of time were raised, when her lawyer, Grant Armstrong, announced that a doctor “with experience as a surgeon” in intensive care and who ran a team with a paediatric doctor had offered to oversee his life support at the hospice and was on his way to court.

However, it later emerged that he was a GP with “no experience of intensive care”, according to Victoria Butler-Cole, the lawyer for the guardian.

Mr Armstrong also said that several nurses at Great Ormond Street had volunteered to assist in Charlie’s care outside the hospital setting.

Charlie’s parents abandoned their fight to allow him to be flown to the US for experimental treatment on Monday, having determined it was no longer viable because of muscular atrophy he had suffered while the case went through the courts. But the case was back in court on Tuesday as Great Ormond Street and Charlie’s parents again found themselves at odds, this time over where he should spend his final hours.

Guardian service