Today Charlie Gard’s parents should find out if their last request for their 11-month-old infant son will be granted.
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 treatment working.
Their final request to a judge this week was to be allowed to take Charlie home to die. The 11-month-old British infant has a rare mitochondrial disease and brain damage. His parents and Great Ormond Street Hospital have been in a months-long legal battle over his treatment.
“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.
London High Court judge Justice Francis is expected to rule on the request today, according to the Daily Mail.
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.
Here’s more from the report:
Charlie’s father Chris Gard spent the day at his son’s bedside as 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.
Grant Armstrong, a lawyer for Charlie’s parents, said he does not understand why the hospital is so opposed to allowing Charlie to go home.
“We can’t see what the problem is,” Armstrong told the judge. “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.”
Armstrong claimed the hospital had put up “obstacle after obstacle” to bringing Charlie home, and said that the couple were willing to fund all costs for out-of-hospital medical staff and had other suitable family properties if needed.
“I am sensing that timing is a lot of the problem here,” said Justice Francis, who is presiding over the case. “It now seems to hinge partly on how long parents want to keep Charlie alive at home.”
The court gave the family until noon on Wednesday to find a medical practitioner prepared to offer intensive care at home.
But the judge suggested moving Charlie to a hospice for his final days appeared to be the most pragmatic decision, according to Reuters.
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.
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.