Judge sets noon Thursday deadline for family to find a team able to support critically ill baby son for number of days

This article is more than 3 years old

This article is more than 3 years old

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, 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.



Timeline Charlie Gard Show Hide Birth Charlie Gard is born a “perfectly healthy” baby at full term and at a “healthy weight”. First symptoms His parents notice he is less able to lift his head and support himself than other babies of a similar age. Doctors discover that he has a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).

Hospital Charlie has become lethargic and his breathing is shallow. He is transferred to Great Ormond Street hospital for children in London on 11 October.

Crowdfunding A crowdfunding page is set up to help finance trial therapy in the United States. Request to high court Great Ormond Street hospital bosses ask the high court judge, Mr Justice Francis, to rule that life-support treatment should stop. First ruling The judge says doctors can stop providing life-support treatment after analysing the case at a hearing in the family division of the high court.

Appeal Charlie’s parents ask three court of appeal judges to consider the case but less than three weeks later their appeal is dismissed. Supreme court ruling Charlie’s parents lose their fight in the supreme court. European court of human rights The case proceeds to the European court of human rights but a week later it is announced that the European judges have refused to intervene. A Great Ormond Street spokeswoman says there will be “no rush” to change Charlie’s care and says there will be “careful planning and discussion”. More time It is thought that Charlie’s life-support is due to be switched off but his parents say that Great Ormond Street doctors have agreed to “give us a little bit more time” with Charlie. They ask for privacy “while we prepare to say the final goodbye”. Interventions Pope Francis and the US president, Donald Trump, intervene; the former calling for the couple to be allowed to “accompany and treat their child until the end”, saying he has followed the case with “affection and sadness”. Vatican hospital Bambino Gesu, the Vatican’s children’s hospital in Rome, offers to take Charlie in. Return to high court Charlie’s parents return to the high court and ask Mr Justice Francis to carry out fresh analysis of the case. The judge says he will consider any new evidence. Dr Michio Hirano The New York neurology professor who offered to treat Charlie travels to London to examine the little boy, discuss the case with Great Ormond Street doctors and other clinicians and examine fresh scans. New scan The lawyer representing Great Ormond Street says the new scan makes for “sad reading”. Abuse Great Ormond Street chairwoman Mary MacLeod says doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages. Charlie’s parents had previously urged people not to send abuse to Great Ormond Street staff. The end of the legal fight The judge’s decision was initially expected the next day but a lawyer representing Charlie’s parents say they are ending their legal fight over his treatment.

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



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 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.”



Francis said he envisaged Wednesday’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 Gosh, said in open court that “it should be Friday”.



After the private discussions on the details had taken place, Yates, shouted:



“What if it was your child?” and “Hope you’re happy with yourself” before leaving the court in tears.



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 Gosh. 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, 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.



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 Gosh and Charlie’s parents again found themselves at odds, this time over where he should spend his final hours.



