Charlie Gard’s parents say the hospital where he is at is making it difficult to take him home. They made the decision yesterday to end their legal battle to save his life because the hospital’s refusal to allowing him to be transferred to another hospital made it so the window of opportunity for the experimental treatment had closed and it was too late to help little Charlie.
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.
With the expectation that Charlie will be removed from life support soon, his parents hope to take him home to be in the comfort of his own house and be surrounded by friends and family.
Charlie’s parents in court today said through an attorney that the hospital is making it difficult for that to happen. Lawyer Grant Armstrong told the London High Court that the parents’ final wish was to take Charlie home.
“We struggle with the difficulties the hospital is placing in the way of the parents having a … short period of time before the final act in Charlie’s short life,” Armstrong said.
But the hospital said it would like to fulfill their wish only “if practical”.
Katie Gollop also said Great Ormond Street would like to fulfil the wish of Charlie’s parents “if practical”.
“The care plan must be safe, it must spare Charlie all pain and it must protect his dignity. At the same time, the plan must honour his parents’ wishes about two matters in particular namely the time and place of his passing,” the hospital’s lawyers wrote in a document presented to the court.
The document said that the invasive ventilation Charlie required was only provided in a hospital setting. Among other practical problems, it said, the ventilator would not fit through the front door of Charlie’s home.
“Charlie is a child who requires highly specialised treatment. His care cannot be simplified. It must be provided in a specialist setting by specialists,” the document said.
A London high court judge will hear their request today, just one day after Connie Yates and Chris Gard decided to end their legal battle to get their son experimental treatment, Reuters reports. 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. When his life support is scheduled to be removed is not yet known.
Charlie’s parents have long expressed the desire to be allowed to put him on hospice and take him home to die. However, their first choice was to take Charlie to the United States for an experimental treatment.
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They raised more than $1.5 million for his 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, who represents Charlie’s parents, 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.”
“This case is now about time,” Armstrong continued. “Sadly time has run out. … Charlie has waited patiently for treatment. Due to delay, that window of opportunity has been lost.”
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, which 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.
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.”
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.