Charlie Gard's parents' fight to take their terminally ill son home to die

Connie Yates, mother of critically ill baby Charlie Gard arrives at the Royal Court of Justice in London overnight. Photo / AP

Charlie Gard's parents are demanding their son is moved home tomorrow for a "few days of tranquillity" before being allowed to die in his own cot on Monday, it was revealed today.

His mother Connie Yates has returned to the High Court and begged a judge to let him come home after his doctors refused their "last wish".

Yates and Charlie's father Chris Gard have accused Great Ormond Street Hospital (GOSH) of putting up "obstacles" and have asked for a "few days of tranquillity" together before putting him to bed and letting him "slip away".

Gard was at their son's bedside today as their barrister Grant Armstrong said: "The parents seek transfer of Charlie tomorrow with time then being spent together as a family in privacy until Monday July 31," when life support would be withdrawn.

He added: "The parents' last wish is to take Charlie home for a few days of tranquillity outside the hospital. Provided appropriate medical care is provided to Charlie, GOSH has no legal right to detain him in hospital."

Great Ormond Street Hospital has concerns about whether it is "practically" possible to move him from the ward to his parents' flat in southwest London.

Katie Gollop, QC for GOSH, said his ventilator won't fit through the front door or up the stairs and moving him could risk him suffering pain or a "distressing or disordered death" - but Charlie's parents say the hospital has not visited their home.

It came as the Pope's hospital in Rome insisted experimental therapy in Italy or in the US "could have been an opportunity" to help Charlie - but it was left "too late".

Yates and Gard parents long to take him home for a bath and to put him to bed in his cot, before saying goodbye. They have also pledged to cover the cost of the ventilator in their home.

Mr Justice Francis, who may be asked to rule on the latest row, told the parties in court: "These are issues which cry out for settlement" as he urged the parties to agree a deal rather than ask for him to decide.

He said: "It seems to me the parents should be entitled to choose how the next days are spent and where. What people don't want is a long period of time. It surely must be in Charlie's best interests that that time is shorter rather than longer."

The judge has now confirmed he will decide on Wednesday whether Charlie will be able to leave Great Ormond Street Hospital and die at home.

Chris Gard, the father of critically ill baby Charlie Gard reads out a statement next witt mother Connie Yates, right, at the end of their case at the High Court in London. Photo / AP

"I will make my final decision tomorrow unless something completely new comes up," he said at the end of a hearing at the High Court in London.

A court hearing is scheduled at 1pm on Wednesday.

The couple have hardly been at their flat in Bedfont, southwest London, since Charlie's illness took hold. They have mounted a vigil by his bedside night and day for month after month.

Armstrong said: "The parents' last wish is to take Charlie home.

"The parents wish for a few days of tranquillity outside the hospital setting before what the lawyers describe as extubation - the process by which Charlie will subsequently expire.

"Yesterday the hospital said we won't stand in the way as long as you can sort it out."

He added that in April US transfer was "not an obstacle to the care of Charlie but for some reason transfer from a hospital in central London to an outlying part of London seems to be problematic".

He said: "I can't see what the problem is. On one hand saying they are not standing in the parents' way, and on the other putting obstacles in the way which can be surmounted."

"The parents had hoped that Great Ormond Street would work with them."

He went on: "The parents' primary position is that Charlie's final days of palliative care should take place at the family home."

Armstrong told the judge: "We struggle with the difficulties which the hospital is placing in the way."

Lawyers for the hospital said bosses had suggested mediation, but added that Charlie's parents had not wished to use the services of a mediator.

They also said medics wanted to avoid hazards or mishaps and wanted to ensure Charlie was safe.

Gollop told the court: "GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door. There are then stairs to negotiate and corners to turn.

"The physical layout of the route between the ambulance on the pavement and their home would require Charlie to be taken off the ventilator and provided with only 'hand-bagging' until he was inside.

"The care plan must be safe, it must spare Charlie all pain and protect his dignity," said Gollop.

"At the same time, the plan must honour his parents' wishes about two matters in particular, namely the time and place of his passing."

She said an offer of mediation had been "reiterated several times".

"Charlie's parents want him to be with them and ventilated at home for several days before receiving palliative care," she said.

"Above all Great Ormond Street wants to fulfil that last wish."

She added: "The key obstacle and one which the hospital cannot see a way around is the reality of invasive ventilation that Charlie requires.

"Charlie is a child who requires highly specialised treatment. His care cannot be simplified.

"It is in Charlie's best interests, and everybody's, that the risk of a precipitate, distressing or disordered death is removed so that he may be reassured of a peaceful and dignified passing."

Gollop said Great Ormond Street had found an "excellent hospice" which would give Charlie and his parents the space, privacy and protection they needed.

Charlie's parents' lawyers said the hospital had not visited the family home to check if it was possible.

Sick baby Charlie Gard in a photo taken at Great Ormond Street Hospital in London. Photo / AP

Charlie's lungs are too weak to function without the help of an artificial ventilator, which he is hooked up to in the paediatric intensive care unit of the London hospital.

A mobile ventilator unit would be needed along with a team of medics. His parents have offered to pay for this privately.

Yates told the court yesterday: "We are now going to spend our last precious moments with our son Charlie, who unfortunately won't make his first birthday in just under two weeks' time."

The question of when and where Charlie's breathing ventilator is withdrawn is likely to be the subject of the intense discussions.

Charlie was due to die in Great Ormond Street on June 30 but this was postponed after his parents accused doctors of blocking their final wish to let him die at home.

They issued a tearful video message in which Yates, 31, said: "We promised our little boy every single day that we would take him home."

Gard, 32, added: "We want to give him a bath at home, put him in a cot which he has never slept in."

He said Great Ormond Street had refused to let them do so, adding: "Our parental rights have been stripped away. We can't even take our own son home to die.

"We've been denied that. Our final wish, if it all went against us, was to take our little boy home to die, and we are not allowed."

The couple said they had been discussing end-of-life palliative care options since last November when Charlie first went into hospital. They had always wanted him to die at home if all else failed, they said.

Yates added: "One option was to let Charlie go home to die. We chose to take Charlie home to die. That is our last wish."

Charlie was born on August 4, 2016, a healthy 8lb 3oz. Aged just 6 weeks, he delighted them with his first smile but a fortnight later, he began to lose weight and strength.

He was admitted to hospital in October last year and transferred to Great Ormond Street where tests revealed he had mitochondrial depletion syndrome. His strain of the disease was so rare he is believed to have been only the 16th sufferer in the world.

His parents both unwittingly carry a faulty gene - meaning in theory they are at risk of the same thing happening in future.

Little boy's year of terror

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.
October 2016 Tests reveal mitochondrial depletion syndrome. Believed to be only 16th sufferer in the world of rare strain.
Autumn 2016 Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie's rare type.
January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.
March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 ($346,000) in days to help fly Charlie to US.
April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.
May Court of Appeal upholds ruling. Parents appeal to Supreme Court.
June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.
July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.
July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.
July 13 US specialist Dr Michio Hirano invited to London by High Court
July 17 Dr Hirano examines Charlie.
July 21 Court told scan results "very sad".
Yesterday High Court due to rule on the case, 10 days before Charlie's birthday - but his parents end their legal battle.
Today Charlie's parents return to the High Court to get him home