Charlie Gard’s mum says she’s had ‘no control over son’s life or death’ as judge rules tot will die in hospice denying parents their ‘final wish’
CHARLIE Gard's mum Connie Yates said the family have had no control over the baby's life or death after a High Court judge denied their wish for extra days to "make precious memories" with their son.
She said "we just want some peace" after Mr Justice Francis approved a plan to move Charlie from Great Ormond Street Hospital to a hospice where he would "inevitably" die shortly afterwards.
He said the 11-month-old would remain at Great Ormond Street for an unspecified "period" of time before being moved to an unnamed hospice.
Once at the hospice, vital life-support care will be removed, resulting in Charlie's "inevitable" death, the judge ruled.
In a statement, Connie Yates explained the judge had denied her and dad Chris Gard's wish to take Charlie away from a hospital environment to die.
She said this was despite her and Chris working "tirelessly" with their legal team to arrange two doctors and a team of nurses to care for Charlie 24/7 in a fully-equipped flat.
She said: "We just want some peace with our son. No hospital, no lawyers, no courts, no media. Just quality time with Charlie away from everything to say goodbye to him in the most loving way.
"Most people won't ever have to go through what we've been through.
Connie Yates' full statement
We just want some peace with our son. No hospital, no lawyers, no courts, no media. Just quality time with Charlie away from everything to say goodbye to him in the most loving way.
Most people won't ever have to go through what we've been through. We've have had no control over our son's life and no control over our son's death.
We are pleased this morning, well as happy as you can be at a time like this, two doctors came forward to offer their help to grant Chris and I our final wish, which was to spend a few days to make precious memories with our beloved son away from the hopsital environment.
In short, the first doctor that came forward was a senior hospital consultant with a dual GMC registration for paediatrics and neonatology. The second doctor is a consultant respirartory paediatrician. These doctors were willing to share the care and be on side 24/7. We also had a team of intensive care nurses who would be by Charlie's bedside 24/7 on rotation.
Additionally, we have been offered the use of a two bedroom flat which is fully equipped with all the required equipment.
Despite us and our legal team working tirelessly to arrange this near-impossible task, the judge has ordered against what we arranged and has agreed to what Great Ormond Street Hospital asked.
This subsequently gives us very little time with our son. I'm not allowed to discuss the time or place, but I'm shocked that after all we've been through they won't allow us this extra time.
Seeing as they didn't allow us our wish, we then asked for extra time here but this has also been denied.
"We've have had no control over our son's life and no control over our son's death."
Connie added she couldn't give the time or place where Charlie will die, as this will remain private.
The ruling came as Great Ormond Street said it "deeply regrets differences between Charlie’s doctors and his parents have had to be played out in court over such a protracted period."
The hospital added: "It has been a uniquely painful and distressing process for all concerned.
"Charlie’s parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so.
"All of us at Great Ormond Street Hospital get up every morning to care for sick children, not to cause further anguish to devoted parents like Chris and Connie.
"We have tried absolutely everything to accommodate their final wishes and engaged not only with those who volunteered to treat Charlie but experts from across the health service in close consultation with the NHS to make this happen."
Now, the family must confront the reality their terminally-ill boy might not make it to his first birthday next week on August 4, as the judge's order states all parties involved agree once the ventilation is removed he will die "within a short period thereafter".
Charlie's parents had on Wednesday desperately appealed to find a consultant willing to take care of him according to their care plan at a hospice, as they begged for a "week or so" more with their son.
GOSH released a statement saying medics wanted to balance Charlie's best interests and his parents needs but did not think he should spend a long period in a hospice.
They wrote: "The care plan must be safe, it must spare Charlie all pain and it must protect his dignity."
Now Mr Justice Francis' order confirms it is in the tot's best interest for life-support treatment to be withdrawn at a hospice - which cannot be named for legal reasons.
Yesterday his mum, Connie Yates - who wanted more time with Charlie before his ventilation is removed - fled court in tears as a judge ruled the tot will go a hospice if no plan was decided upon.
Great Ormond Street Hospital's full statement on the ruling
"We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have had to be played out in court over such a protracted period.
"It has been a uniquely painful and distressing process for all concerned.
"Charlie’s parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so.
"All of us at Great Ormond Street Hospital get up every morning to care for sick children, not to cause further anguish to devoted parents like Chris and Connie.
"We have tried absolutely everything to accommodate their final wishes and engaged not only with those who volunteered to treat Charlie but experts from across the health service in close consultation with the NHS to make this happen.
"This included exploring the unprecedented step of delivering intensive life support away from a hospital intensive care unit.
"Sadly, as the judge has now ruled, there is simply no way that Charlie, a patient with such severe and complex needs, can spend any significant time outside of an intensive care environment safely.
"The risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome for all concerned and would rob his parents of precious last moments with him.
"As the judge has now ruled, we will arrange for Charlie to be transferred to a specialist children’s hospice, whose remarkable and compassionate staff will support his family at this impossible time.
"This is a very special place who will do all they can to make these last moments as comfortable and peaceful as possible for Charlie and his loved-ones.
"Great Ormond Street Hospital would like to reassure everyone who has followed this heart-breaking story that we always puts the best interests of every single one of our patients above all else.
"While we always respect parents’ views, we will never do anything that could cause our patients unnecessary and prolonged suffering.
"The priority of our medical staff has always been Charlie.
"Our doctors and nurses have worked tirelessly and done their utmost for him in the months he has been in our care.
"Every single one of us wishes there could have been a less tragic outcome.
"Our thoughts and deepest sympathies go out to Chris and Connie, and we hope that their privacy is respected at this devastating time for their family."
He gave both parties a deadline of 24 hours, which ended at 12pm yesterday, and the latest ruling suggests no mutually agreed care plan was reached.
Connie and Chris had argued their son should be at home for a few days before his life-support is switched off, but doctors caring for the terminally ill boy said it would not be possible to get the equipment into their property.
Family lawyers in court on Wednesday conceded Charlie could go to a hospice to die - but requested the family choose the team who would treat him, something which left both parties still disagreeing by the end of the hearing.
Great Ormond Street bosses said they were not satisfied a properly-qualified specialist would be in control under Charlie's parents' plan.
The name of the hospice will remain private, as will other, more specific, details.
Connie - who was at the High Court alone - began crying and shouting “what if it was your child?” and "I hope you are happy with yourselves" before leaving the hearing on Wednesday.
Following the hearing, Charlie's godfather James Evers hit out at the "unnecessary hurdles" put in the way of Ms Yates and Mr Gard's wishes.
He said: "We know (Charlie) is not in pain and suffering, so to set the bar so high that he needs this specialist with him 24/7 is setting a massive hurdle that is totally unnecessary.
"It's the nurses that look after him 24 hours a day so really that should be enough."
Nurses from the hospital volunteered to take care of the tot before life support is removed - meaning they would work 12 hour shifts - and the parents' team have been in touch with ventilator suppliers, the court heard.
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Fiona Paterson, a lawyer representing GOSH said on Wednesday the situation could not carry on and said "this cannot drag on into another day".
After Mr Armstrong asked for 48 more hours to find an intensivist [board-certified physician who provides special care for critically ill patients] who can take care of Charlie, the judge said the indecision between the two groups is "compounding" the parents' misery.
He had said he hoped for an agreement to be reached on July 26 and said: "I have gone out of my way to accommodate the parents' wishes."
He then asked journalists and members of the public to leave the court, so all parties could speak privately again.
On Tuesday Charlie's parents begged for an intensive care doctor to help take him home to die and were given less than 24 hours to find a specialist to supervise the move.
Connie told : "We promised Charlie every day we would take him home.
"It seems really upsetting after everything we've been through to deny us this."
Mr Justice Francis had said having heard the evidence, the chances of Charlie's parents' wishes being fulfilled were small.
On Monday the youngster's parents gave up their legal battle to take him to the US for experimental treatment.
Mr Armstrong had suggested to Mr Justice Francis that hospital bosses were placing obstacles in Charlie's parents' way.
"The parents wish for a few days of tranquillity outside of a hospital setting," Mr Armstrong said.
"The parents had hoped that Great Ormond Street would work with them.''
He said the couple felt there was a ''brutality'' in taking Charlie - who has mitochondrial depletion syndrome - to a hospice.
Barrister Katie Gollop QC, who leads Great Ormond Street's legal team, said staff were not creating "obstacles".
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She said staff had "moved heaven and earth" for Charlie and wanted to fulfil the couple's wishes but needed to be practical.
She said Great Ormond Street staff had found an ''excellent hospice'' which would give Charlie and his parents the space, privacy and protection they needed.
Mr Gard and Ms Yates, who are in their 30s and come from Bedfont, west London, had asked Mr Justice Francis to rule that Charlie should be allowed to undergo a therapy trial in New York.
Doctors at Great Ormond Street said the therapy would not help. They said life-support treatment should stop.
Mr Justice Francis in April ruled in favour of Great Ormond Street and said Charlie should be allowed to die with dignity.
Charlie's parents subsequently failed to overturn his ruling in the High Court, Court of Appeal and Supreme Court in London.
They also failed to persuade European Court of Human Rights' judges to intervene.
But the couple had recently returned to court, saying they had new evidence, and they asked Mr Justice Francis to change his mind.
But on July 19, Dr Michio Hirano failed to convince Great Ormond Street medics that his experimental treatment offers a lifeline to little Charlie.
In a statement earlier in the week the hospital outlined their “disappointment” in Dr Hirano and said he had "financial interests" in the drug which he said could save Charlie.
Dr Hirano agreed he could not help the young boy and said in a statement: "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 56-year-old joined the international debate over Charlie's care as the Pope and Donald Trump became involved.
The Times reported his field of research is new and some patients are misdiagnosed when they first show symptoms.
Others who have worked with the US doctor said there is limited financial gains to be made in his field of work and research.
A lawyer representing Great Ormond Street said a new MRI scan on Charlie made for “very sad reading”.
Mr Justice Francis considered all the evidence on July 24 and was expected to make a final decision on Charlie’s fate on July 25.
But it was announced on July 24 that Charlie’s parents were ending their legal fight and had withdrawn their application from the High Court.
Their barrister Grant Armstrong told the court: “This case is now about time. Sadly time has run out.”
Mr Armstrong said Charlie’s parents had made a decision following the latest medical reports and scans, adding that damage to the tot’s muscle and tissue was irreversible.
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