It looks like little Charlie Gard will be moved to hospice against his parents’ last wish before he dies.
On Monday, Connie Yates and Chris Gard decided to end the legal battle to get their son experimental treatment. Based on new evidence, the couple said Charlie’s condition has deteriorated too much and there no longer is any hope of the experimental treatment working.
Their final request to a judge this week was to be allowed to take Charlie home to die or at least given a few days with him to say goodbye before his ventilator is removed. The 11-month-old British infant has a rare mitochondrial disease. His parents and Great Ormond Street Hospital have been in a months-long legal battle over his treatment.
London High Court Justice Francis gave Charlie’s parents and the hospital until noon today (British time) to agree on a plan for Charlie’s final hours; if they did not, the judge said Charlie would be moved to hospice, according to the Mirror.
“Unless by 12 noon the parents and the guardian and the hospital can agree an alternative arrangement, Charlie will be transferred to a hospice and extubated shortly after,” Justice Francis ruled.
Charlie’s say they have found a doctor willing to look after the 11-month old boy so they can spend time with him at home away from the hospital during his final days but Judge Francis says Charlie will die in a hospice unless both sides can agree. That prompted an emotional response from Yates.
“We promised Charlie every day we would take him home. It seems really upsetting, after everything we’ve been through, to deny us this,” his mother said.
The hospital opposes the parents’ request. Its lawyers argued that Charlie needs to stay at the hospital or go to a hospice facility until he dies. Doctors claimed his ventilator will not fit through the door of his parents’ home, and he could suffer a painful death.
But the noon deadline now has passed, and it looks like the two sides have not reached an agreement. Unless something changes at the very last minute, Charlie will be moved to hospice to die rather than his home.
The hospital opposes the parents’ request. Its lawyers argued that Charlie needs to stay at the hospital or go to a hospice facility until he dies. Doctors claimed his ventilator will not fit through the door of his parents’ home, and he could suffer a painful death.
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Here’s more from the Malay Mail Online:
His parents have since been trying to find an intensive care doctor to oversee a plan that would allow Charlie to be ventilated in a hospice for several days so that they could bid farewell to their son, whose birthday falls on Aug. 4.
“We need some peaceful time with our baby boy,” the parents said in a statement. “We need a paediatric intensive care consultant to come forward to assist and facilitate with a hospice stay.”
A lawyer for Charlie’s court-appointed guardian had told the High Court that no hospice could provide care for intensively ventilated children for a long time, so the parents’ wish to spend several days with him could not be fulfilled.
Charlie’s mom Connie Yates made a final plea for help on Facebook last night.
In her emotional post, she wrote: “URGENT to get more time with Charlie we need a pediatric intensive care consultant to come forward to assist and facilitate with a hospice or home stay by 12pm tomorrow, we will pay privately.
“PLEASE HELP US!! Can you please contact James (Charlie’s godfather) on [email protected] please only email if you can help us!
“We need some peaceful time with our baby boy.(sic).”
The name of the hospice Charlie is set to be moved to will remain private, as will other, more specific, details.
Justice Francis prohibited details about the hospice facility and the timing of the removal of Charlie’s ventilator from being released publicly.
Charlie’s first birthday is Aug. 4.
Charlie’s parents have long expressed the desire to be allowed to take him home to die. However, their first choice was to take Charlie to the United States for an experimental treatment. They raised more than $1.5 million for his medical care.
His parents said they knew the chance of the experimental treatment working was slim, but they wanted to try anyway for Charlie’s sake.
However, the courts and hospital refused to allow them to transfer their son to another hospital. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die. However, the hospital later agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator.
But on Monday, lawyer Grant Armstrong said experts confirmed that it is too late to treat their son.
The BBC reports Armstrong “told the presiding judge Mr Justice Francis that US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.”
Hirano previously said Charlie had an 11 percent to 56 percent chance of benefiting from the experimental treatment. He and a group of doctors examined Charlie last week and gave their expert opinions to the judge.
Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle between Charlie’s parents and the hospital. The court battle began in March.
Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live, and his parents should be allowed to make decisions about his medical care.
His mother told Good Morning Britain previously that she does not want her son to suffer. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.
“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”
Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle between Charlie’s parents and the hospital. The court battle began in March.
In the Royal Court of Justice in London, Connie stated, “Charlie was left to lie [in Great Ormond Street Hospital] and deteriorate. We wanted Charlie to have the chance … [there] was never false hope, as confirmed by many experts. Now we’ll never know…” Connie and Chris underscored that they “should have been trusted as parents.”
Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live.
Leading pro-life advocates helped Charlie’s parents fight for his life.
Charlie’s parents brought Terri Schiavo’s brother Bobby Schindler to London to help them fight for care for their son. Schindler spoke with LifeNews exclusively about their invitation.
Schindler told LifeNews: “We are here by invitation from the family to come alongside them as they struggle to save their son, Charlie. The critical issue here is not a political one, but the simple notion that families know what is best for their loved ones.”
“Charlie’s situation is very reminiscent of my family’s battle to save my sister, Terri. Hopefully being here can help his parents, Connie and Charlie, deal with the day-to-day emotional roller coaster, as they fight for their son’s right to live,” Schindler added.
