Eight-month-old Charlie Gard was born with a deadly mitochondrial disease so rare that only 16 cases are believed to exist in the world, a disease that causes progressive muscle weakening and severe brain damage. Doctors at Great Ormond Street Hospital (GOSH) have been fighting for the right to remove the infant from life support, arguing that he will never get better. Charlie’s parents have been fighting to keep him alive.
Currently, little Charlie Gard, who is blind, deaf, and suffering from irreversible brain damage, is being kept alive with the assistance of a ventilator. His parents argued in the London high court that they want to keep Charlie alive long enough to come to the United States for experimental treatment. Specialists at GOSH argued that the severely disabled child is capable of feeling pain and that even with the experimental treatment, Charlie’s condition would never improve.
As Fox News reports, Mr. Justice Francis handed down a decision about Charlie Gard’s future on Tuesday, a decision that will impact his parents’ ability to keep him alive via life support. The news, for Charlie’s distraught parents at least, was not good. The justice ruled against their plea to keep the 8-month-old on life support, calling the decision to withdraw life-sustaining care “in Charlie’s best interest.”
“It is with the heaviest of hearts but with complete conviction for Charlie’s best interests that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”
Since his diagnosis, Charlie Gard’s parents raised over £1.2m through a GoFundMe campaign since the infant was diagnosed with mitochondrial depletion syndrome after his health began to decline at 8 weeks old. The money was slated to help pay for Charlie to come to America for his experimental nucleoside bypass therapy, and even in the wake of Tuesday’s ruling, donations for Charlie continue to roll in to his devastated parents. It has been reported that if Charlie Gard never gets the chance to travel to the U.S. for his treatment, the money will be donated to research for his rare and fatal genetic disease. It has been reported that GoFundMe plans to discuss the dispensation of the donated funds privately, after the Charlie Gard case is fully resolved.
As The Guardian reports, in his ruling, the justice wrote that even if the experimental treatment was successful in the case of Charlie Gard, it would do nothing to improve the brain damage that the 8-month-old has already sustained as a result of his condition. He added that Charlie’s parents, Chris Gard and Connie Yates, had admitted through the course of the hearing that Charlie’s current quality of life was not worth sustaining.
“But if Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?”
And what is Charlie Gard’s current quality of life? According to the justice, he requires a ventilator to breathe, and they believe that “he has a sleep/wake cycle and can recognize them and react to them,” but that they “realize that he cannot go on as he is lying in bed, unable to move, fed through a tube, breathing through a machine.”
According to the justice and medical professionals, despite the hopes and pleas of his parents, no treatment can restore Charlie’s ability to live a life not dependent upon life support.
The public has weighed in heavily on the Charlie Gard case, sharing their opinions on social media, as well as their financial support on GoFundMe.
Not surprisingly, Charlie’s parents reacted with shock and horror when they learned that Mr. Justice Francis had ruled against them, controversially paving the way for GOSH to remove their son from life support against their express wishes. Through their lawyer Laura Hobey-Hamsher, the couple thanked the public for their support and expressed a desire to spend as much time with Charlie as possible in the immediate future.
“This court has had to face one of the most fundamental issues for any court. It has not been easy. Lessons do, however, need to be learned about how medical professionals face decisions such as this.
“Connie and Chris want me to make clear how profoundly grateful they are for all of the help and generosity they have received throughout this time… Their immediate priority is returning to, and spending time with, Charlie.”
While the justice’s Tuesday ruling that Charlie Gard can legally be removed from life support against his parents’ wishes was reportedly heartbreaking for those closest to the little boy, all hope is not yet lost. Charlie won’t be taken off of his ventilator immediately; his parents will have time to appeal the high court’s controversial decision.
While they have yet to confirm their intent to appeal, a lawyer by the name of Pravin Fernando reportedly told Justice Francis that Charlie’s parents do indeed wish to do just that immediately following the Tuesday ruling. Reportedly, they will have three weeks to get their legal challenge to the justice’s life support decision filed with the court.
What are your thoughts on the case? Is it ever appropriate for a court to step in to have a child removed from life support against their parents’ wishes, as in the Charlie Gard case?
[Featured Image by Connie Yates/GoFundMe]