Doctors at Great Ormond Street Hospital have dismissed infant Charlie Gard as a hopeless case.
Parents of the British infant, who suffers from a rare mitochondrial disease and brain damage, and the hospital are involved in an on-going legal battle over his medical care.
Chris Gard and Connie Yates want to take their son to the United States for an experimental treatment. They raised more than $1 million for his care, and said they want to give Charlie every chance at life.
His parents said they know the chance of the experimental treatment working is slim, but they want to try anyway for Charlie’s sake.
But so far, the courts and hospital have refused to allow them to transfer their son to another hospital for the treatment. Three weeks 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 recently agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator.
This week, a United States specialist on mitochondrial disease flew to London to examine Charlie. Details from the examination have not been made public yet. A judge is scheduled to review the examination next week and determine whether Charlie will be allowed to try the experimental treatment.
The hospital maintains that Charlie’s case is hopeless because he does not have a chance of any “quality of life,” according to the Birmingham Mail.
“At the heart of Charlie’s parlous and terrible condition is the question, how can it be in his best interests for his life-sustaining treatment to be withdrawn?” the hospital said in a statement.
“Charlie has been treated on GOSH’s neonatal intensive care unit for many months now and very sadly, the question that arises for him arises for other patients and families at the hospital too.
“GOSH has treated over a thousand patients with mitochondrial disease and offers pioneering treatment, including nucleoside treatment, where appropriate. Despite all the advances in medical science made by GOSH and the other hospitals around the world, there remain some conditions that we cannot cure and we cannot ameliorate,” it continued.
Doctors caring for Charlie at the London hospital unanimously agree that it would be best to turn off his ventilator and allow him to die, according to the hospital.
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“That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life,” according to the statement.
Dr. Michio Hirano, MD, a Harvard-trained neurologist, examined Charlie this week to provide his expert opinion about experimental treatment. He previously said he thinks the 11-month-old has a chance of benefiting from the therapy.
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.
“They wish to exhaust all possible options,” said Richard Gordon, a lawyer for Charlie and his parents. “They don’t want to look back and think ‘what if?’. This court should not stand in the way of their only remaining hope.”
Yates told told Good Morning Britain last week, “I’ve heard from doctors that there’s around a 10 percent chance of this working for Charlie so I think that’s a good enough chance to take.”
She said 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.”
Charlie suffers from a rare genetic disorder, mitochondrial DNA depletion syndrome, which can cause weakened muscles and organ dysfunction, among other symptoms, and though his parents have raised money for additional treatment and hospitals around the world have volunteered their services, hospital officials have refused to allow the infant to be released to his parents.
Charlie entered Great Ormond Street Hospital in London in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.
The main argument offered by the hospital to countermand parental authority was to protect Charlie’s “best interests.” However, attorneys for Charlie’s parents argued that the hospital was basically holding Charlie hostage, violating several articles under the European Convention on Human Rights, including the rights to life, liberty and family privacy.