Charlie Gard’s mother Connie Yates leaving court today
A High Court judge has given Charlie Gard’s parents until midday tomorrow to reach an agreement with Great Ormond Street Hospital on arrangements for the end of his life.
Mr Justice Francis said the 11-month-old will be transferred to a hospice where his ventilation tube will be removed if doctors and his parents fail to reach a compromise about how he should be cared for in his final moments.
Charlie’s parents Connie Yates and Chris Gard had said it was their final wish to take him home to ‘slip away’ in his cot before his first birthday.
Both his parents and doctors have now conceded that he should move to a hospice – but continue to disagree over the detail of care plans.
Miss Yates and Mr Gard wanted to spend a week at a hospice with Charlie before he died.
But Great Ormond Street bosses said they were not satisfied that a properly-qualified specialist would be in control under the parents’ plan, and said life-support treatment should end shortly after Charlie arrived at a hospice.
A family friend said the pair ‘will be devastated they have not been granted their final wishes as parents.’
Charlie is only expected to spend a few hours in a hospice because they are not licensed to be able to look after him for more than a few hours once the ventilator is taken off.
Miss Yates was in court today wearing a heart-shaped pendant engraved with ‘Charlie’ while Mr Gard continued the vigil at their son’s bedside.
Before the judge returned to court, Miss Yates sobbed and said: ‘I don’t want to be in the same room as him.’
Apparently referring to the lawyers for the hospital, she added: ‘I hope you are happy with yourself. How can you do that? What if it was your child?’ before running out of court crying.
Charlie Gard’s parents Connie (pictured with her son) and Chris wanted to bring him home and spend a few days together before life support is withdrawn on Monday, the court heard yesterday
Charlie Gard’s mother Connie Yates (pictured today) has been begging a judge to let them take their son home to die
Miss Yates always wears a heart shaped pendant in honour of her ‘warrior’ son as well as a blue flower in her hair and blue wrist bands
On Monday, Miss Yates, 31, and Mr Gard, 33, reduced the High Court to tears by making the agonising decision to let Charlie die after an eight-month legal battle.
They accepted their 11-month-old, who has mitochondrial disease, was now beyond hope of any cure – which they blamed on ‘a lot of wasted time’ by medics – and would not live to see his first birthday on Friday next week.
Connie Yates (pictured today) had said it was their final wish to let their son ‘slip away’ peacefully at home in his cot
But their plan to take Charlie home, give him baths and let him sleep in his cot before saying their final goodbyes on Monday next week were dashed by the hospital.
Great Ormond Street said he should go to a hospice – or stay with them – because his ventilator won’t fit through the front door and doctors fear he could suffer pain or a ‘distressing or disordered death’.
A 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.’
Chris Gard and Connie Yates in court yesterday had previously stated their desire to take their son Charlie home
The judge said life-support treatment would end shortly after Charlie arrived at the hospice.
Grant Armstrong, who led Charlie’s parents’ legal team, said the couple wanted to privately fund care at a hospice where Charlie could continue to receive life-support treatment for days before being allowed to die.
He said a doctor was ready to help and several Great Ormond Street nurses had volunteered their services.
Great Ormond Street bosses said they were not satisfied that a properly-qualified specialist would be in control under Charlie’s parents’ plan.
A lawyer in the couple’s legal team said discussions about mounting an appeal against Mr Justice Francis’s decision not to allow more time were taking place.
Mr Armstrong said a firm had offered to ‘provide any type of ventilator that is required.’
Two nurses would be needed for each shift lasting eight to 12 hours and GOSH staff have volunteered to work on their days off or between shifts at the hospital.
Mr Armstrong, referring to a list of requirements set out by GOSH for Charlie’s care outside the hospital, said: ‘We believe we will be able to deal with that and have the appropriate nursing staff available.’
He said moving Charlie was unproblematic, as shown by ‘that rather charming photograph’ taken on the rooftop of the hospital earlier in the summer, when staff helped the parents take him for a picnic.
‘In itself, transfer should not be a difficult issue,’ said Mr Armstrong, saying Charlie remained in a stable condition.
If Charlie’s breathing tube became displaced, it could easily be adjusted back, and it was ‘highly unlikely’ it would fall out completely, he told the court.
He said it was not necessary to have doctors there all the time but that a pair of medics would be provided on a ’24/7 backup’ basis.
Victoria Butler-Cole, representing Charlie’s court-appointed guardian, said she understood the family’s proposed doctor was ‘not a paediatric intensive care consultant’.
Chris Gard and Connie Yates (pictured on Monday) have long been in dispute with Great Ormond Street Hospital over their final wishes for their little boy
Charlie, pictured on July 14, will require a medical team and mobile ventilator
Judge slams ‘pure nonsense’ in ‘ill-informed’ social media posts about Charlie
Mr Justice Francis (pictured) issued another attack on ill-informed social media users. He said ‘pure nonsense’ was doing the rounds about the ‘state’ versus the parents.
He said: ‘If I was to deal with everything on social media, we would be here for weeks.
‘What is happening is that I have to make a decision on what is Charlie’s best interests.
‘The parents desire to take him home or to a hospice and I am making every effort possible to meet that desire.
‘But the notion the state is involved, just because we have a nationalised health service, is pure nonsense.’
Earlier this week, Mr Justice Francis said ‘people who know almost nothing’ about the case should refrain from giving opinions based on their feelings rather than facts.
Charlie’s mother Connie Yates had issued a desperate last-minute appeal to ‘any paediatric intensive care doctor to come forward’ to help them.
Miss Yates said last night: ‘We promised Charlie every day we would take him home. It seems really upsetting, after everything we’ve been through, to deny us this.’
But the family believe they would be able to satisfy demands for Charlie to be well looked after in a hospice by medics in his final days.
Charlie’s father Chris Gard was again at his son’s bedside today.
Yesterday they accused hospital chiefs of placing ‘obstacle after obstacle’ in the way of their final wish to take him home to die.
They went back to the High Court to beg to be allowed to spend four days of ‘tranquillity’ with their son before withdrawing his life support.
But Great Ormond Street Hospital said his ventilator ‘does not fit through the front door’ of the family’s flat in Bedfont, south-west London – and suggested a team of six specialist nurses and three doctors would need to accompany him to ensure his ‘dignity’.
After a bad-tempered court hearing, the couple’s lawyer snarled ‘Give them some peace!’ at the hospital’s QC Katie Gollop.
Farewell: Charlie’s grandparents give what they thought were their final kisses to him earlier this year before interventions from the White House and the Vatican saw the legal case to save him reignited
Barrister Grant Armstrong, who is representing the family for free, told the court: ‘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, Great Ormond Street has no legal right to detain him in hospital.’
Pope’s hospital insists Charlie should have had the chance to try experimental drugs – but now it’s ‘too late’
A Vatican paediatric hospital says experimental therapy ‘could have been an opportunity’ to help Charlie Gard, but it was too late to start care for the critically ill baby.
Bambino Gesu Hospital had offered to treat the 11-month-old boy while his parents were trying to persuade UK courts to tell Great Ormond Street Hospital in London to release the boy for treatment in the United States.
Hospital chiefs said in a statement that they are not in a position to know what might have happened six months ago and cannot know if Charlie would have responded to the experimental therapy.
Hospital director Mariella Enoc (pictured) told reporters that they carried out a clinical evaluation and offered medical assistance free of charge.
But he said: ‘They have put obstacle after obstacle in the parents’ way.’
Mr Armstrong said the hospital had previously agreed there was ‘no issue’ with Charlie being allowed home to die, but for unknown reasons was now blocking it. He said: ‘We can’t see what the problem is. On one hand they are saying they are not standing in the parents’ way, and on the other are putting obstacles in the way which can be surmounted.’
The court heard the hospital was insisting a ‘full team’ of paediatric intensive care doctors and nurses would be needed, along with a ‘health and safety assessment’, a special bed and ‘security personnel and a police escort’ to take Charlie home.
But the ‘key obstacle which the hospital cannot see a way around’, said Great Ormond Street’s QC Katie Gollop, was Charlie’s need for a ventilator to help him breathe – which she claimed would not fit though the front door of the parents’ flat.
Miss Gollop said it was outrageous to say the hospital was putting up obstacles. ‘Nothing could be further from the truth,’ she said. ‘The hospital has moved heaven and earth to make [the parents’ wish] possible.’ She claimed Great Ormond Street chiefs had scoured the ‘length and breadth’ of the UK for a paediatric intensive care doctor willing to look after Charlie at home but had come away empty handed.
Mr Armstrong said an agency would supply 24-hour nursing and there was no need for a team of doctors as Charlie was stable and the couple just wanted to say their goodbyes in private at home.
Mr Justice Francis said the parents ‘should be entitled to choose how the next days are spent and where’. But he added it was best for Charlie if his final days were ‘shorter rather than longer’.
He expressed fears about Charlie suffering if something went awry with his breathing tube at home. And he pledged to do all he could to meet the parents’ wishes, but warned: ‘If I can’t, I can’t.’ He said if it was really true Charlie required a round-the-clock team of intensive care medics, ‘then that is going to be conclusive’.
He had granted Charlie’s parents until lunchtime today to come up with evidence they could provide an appropriate setting for his death, but added: ‘It looks like the chances are small.’
A hospice has agreed to help but Miss Gollop said British hospices were not ‘licensed or insured’ to take someone with Charlie’s needs overnight, so he would need to die the same day he arrived – in defiance of the parents’ wishes to spend ‘a few precious days’ with him.
Chris Gard announced they must now ‘do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go’
Charlie Gard, pictured moments after he was born on August 4, 2016 weighing 8lb 3oz, appeared to be a perfectly healthy baby, but two weeks later he started losing weight
US doctor who offered experimental drug to incurably ill baby Charlie Gard admits MRI scan showed ‘no hope’ for the child
Michio Hirano (pictured) said his experimental drugs might help Charlie Gard, and he offered to treat him in the US
The American neurologist criticised by Great Ormond Street has today admitted a body scan done when he flew to London extinguished all hope for Charlie Gard.
Michio Hirano also denied claims he has cash invested in the drug he offered to Charlie.
The professor said his experimental nucleoside treatment had a chance of helping the sick child and he offered to treat him in the US.
But he was accused of giving Charlie’s family false hope and lawyers for Great Ormond Street said they were concerned to learn the doctor had a financial interest in some of the drugs he proposed to use.
The children’s hospital also said it was disappointed he had been so optimistic when he had not examined Charlie himself, or read his latest medical records or seen his brain scans.
Hitting back today Dr Hirano, who works at Columbia University Medical Centre in New York, claims that he now has no investment in the drug Charlie’s parents wanted him to have.
Speaking for the first time he said: ‘As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition’.
The court case over Charlie’s treatment was reopened after Dr Hirano and six other experts said they had new evidence that could affect the judge’s earlier decision that the boy would not benefit from further treatment and should be allowed to die.
The US neurologist flew to London to examine the little boy along with a doctor from the Pope’s children’s hospital in Rome.
Radical American pastor Patrick Mahoney (centre, outside the Royal Courts of Justice) loudly called on God to change the judge’s mind. He has been arrested – and jailed – in the US for repeated direct action against judges and medics he perceives as being pro-abortion
Dr Hirano said today: ‘I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition.
‘Unfortunately, a MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment’.
Before his defence Great Ormond Street’s lawyer, Katie Gollop QC, said there were no grounds for such optimism and she questioned why Charlie’s parents were led to believe Dr Hirano’s nucleoside bypass therapy could help.
In a statement to the High Court, she said: ‘When the hospital was informed that the professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.
‘It was, therefore, with increasing surprise and disappointment that the hospital listened to the professor’s fresh evidence to the court.
‘On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition – obtained from experts all of whom had taken the opportunity to examine him and consider his records – or even read the judge’s decision made on April 11.
‘Further, GOSH was concerned to hear the professor state, for the first time, while in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism.
‘Rather, it confirms that while NBT may well assist others in the future, it cannot and could not have assisted Charlie.’
Supporters of Charlie Gard’s parents outside the High Court react as news that his life will end came through
Dr Hirano, a Harvard-educated neuroscientist, told the High Court that new drugs had a ‘small but significant’ chance of helping Charlie’s rare condition and it was ‘worth trying’.
Great Ormond Street has been praised by judges for its care of Charlie, but has faced condemnation by some pro-life campaigners.
It has emerged that hospital staff have received death threats and abuse and that police were called after ‘unacceptable behaviour’ was recorded in the hospital.
The case took on the air of a circus when Donald Trump and Pope Francis made high-profile interventions at the start of July. They were swiftly followed by a radical American pastor loudly calling on God to change the judge’s mind. The pastor – Patrick Mahoney – arrived on July 9 bringing his ‘power of prayer’. He has been arrested – and jailed – in the US for repeated direct action against judges and medics he perceives as being pro-abortion.
Next up was American attorney Catherine Glenn Foster, part of Rev Mahoney’s pro-life lobby. She planted a tender kiss on Charlie’s head and then tweeted it to her followers and made it her Facebook profile photo.
She has apparently been offering legal tips to the family. Alasdair Seton-Marsden, a UKIP candidate in the general election, was also involved in the case.
He initially made statesman-like pronouncements on behalf of the family outside court. But then he started appearing on American television accusing the NHS of holding Charlie ‘as a captive’. He then fell out with Charlie’s parents over the media strategy.
Last Saturday, hospital chief Mary MacLeod called in police and issued a statement revealing ‘a shocking and disgraceful tide of hostility and disturbance’. In response, Miss Yates and Mr Gard said they were ‘extremely upset by the backlash we have received after Great Ormond Street Hospital put out their statement’. They added: ‘We too have suffered from the most hurtful comments from the public and GOSH is aware of this.’
Dr Hirano specialises in mitochondrial depletion syndrome.
LITTLE BOY’S YEAR OF TORMENT
In October, he was transferred to Great Ormond Street where tests found he was suffering from an incredibly rare mitochondrial depletion syndrome which affects just 16 people
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 Miss 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 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’.
Monday High Court due to rule on the case, ten 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
Will his equipment fit through the front door?
Great Ormond Street Hospital fiercely denied putting up obstacles to stop Charlie’s parents taking him home – yet insisted their flat would need transforming into an intensive care unit.
A full paediatric intensive care team of up to three doctors and six nurses working in shifts around the clock would be required, they said.
On top of that, specialist equipment including a ventilator which ‘does not fit through the front door’ would need to be taken to his home, and ‘there are then stairs to negotiate and corners to turn’. Then there is a ‘gas supply which requires a health and safety assessment’, the court heard.
Physical access for a special bed was also needed.
Victoria Butler-Cole, a barrister representing Charlie’s guardian, said Great Ormond Street had also told her: ‘Lastly and fundamentally, the provision of intensive care in a home setting needs to be licensed.’ The judge said it was difficult to argue with all this. But speaking for the family, barrister Grant Armstrong poured scorn on the need for such a big operation. He said Charlie was stable, there was no evidence that he was in pain, and patients were ‘routinely’ allowed to be ventilated at home.
A portable ventilator was no larger than an electric heater, he suggested, and there were no stairs to the parents’ ground-floor flat – which he said Great Ormond Street had never visited.
He said Connie Yates had found agencies willing to supply nurses round the clock and a doctor would only need to be on call.
Last night an NHS source told the Daily Mail the most common ventilators in paediatric intensive care units were Maquet Servo Us which ‘are about the size of a PC computer, and they wheel them round hospitals, so they easily fit through doorways’, adding: ‘The portable ones are even smaller, about the size of a foot heater, which they use to transfer patients around the world.’