The heartbroken parents of U.K. 10-month-old Charlie Gard have reportedly been dealt another devastating blow in the case of their terminally ill son’s impending death. Earlier this week, Connie Yates and Chris Gard lost their final appeal to keep their infant son, who suffers from an incredibly rare form of mitochondrial depletion syndrome, alive on life support long enough to receive experimental medical treatment in the United States. Now, the reeling parents have reportedly been told that they cannot bring the baby home to die in his own bed.
What’s more, Charlie Gard’s parents have revealed that physicians at Great Ormond Street Hospital will be removing Charlie from life support tomorrow, which means that they will have just one more night with their ailing son.
Charlie’s condition is so rare that just 16 cases are known to exist worldwide. The mitochondrial condition causes progressive brain damage and muscle weakness. Currently, Charlie Gard is suffering from severe brain damage, blindness, and deafness. Doctors have argued that his life consists of little more than needless pain and suffering and that even with experimental treatment, his brain damage is irreversible. According to physicians and the European Court of Human Rights, it is time to allow Charlie to “die with dignity,” despite his parents’ desperate fight to keep him alive.
On June 27, Europe’s Court of Human Rights refused to hear the final plea filed by Charlie Gard’s parents, clearing the way for doctors to remove the baby from the life support machines that have been keeping him alive for months. In the immediate aftermath of the court’s final decision to allow Charlie Gard to “die with dignity,” the staff at the Great Ormond Street Hospital said that they had no immediate plans to “change Charlie’s care.”
“There will be no rush to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
Just days later, however, Charlie’s parents say that the hospital is rushing to turn off their baby’s life support and that the hospital refuses to allow the baby to return to his own home to die, despite his parents’ offers to pay for his transport and final moments of care.
Throughout the fight to keep Charlie Gard alive, his parents raised nearly £1.4 million via crowdfunding to pay for his trip to the United States for experimental treatment. Now that Charlie will never get his chance to be treated in the U.S., it seems likely that the money will go to a charity/charities specializing in mitochondrial depletion syndrome research.
Charlie Gard’s parents have called the hospital and doctors “heartless” in denying them their “final wish” for their dying son, adding that they promised the baby every day that they would take him home from the hospital where he (and they) have been living since last year.
“We promised our little boy every single day that we would take him home. We want to give him a bath at home, put him in a cot which he has never slept in but we are now being denied that. We know what day our son is going to die but don’t get a say in how that will happen.”
Charlies parents said in a video released on the Daily Mail that they are spending the final hours of their son’s life with their baby boy.
The couple also thanked all of their son’s supporters, members of the aptly named “Charlie’s Army,” who donated so much money to help the baby travel to America for the experimental treatment that he will now be denied.
“Charlie will die tomorrow knowing that he was loved by thousands – thank you to everyone for all your support.”
The parents of Charlie Gard claim that in addition to refusing to allow their dying infant to pass away in his home, the hospital has refused to allow them to transport the baby to an “expert hospice” to handle his final hours. What’s more, the heartbroken parents say that despite earlier promises that the hospital wouldn’t rush to remove Charlie Gard from his ventilator, that’s precisely what they are doing.
“‘We begged them to give us the weekend. Friends and family wanted to come and see Charlie for the last time. But now there isn’t even time for that. Doctors said they would not rush to turn off his ventilator but we are being rushed.”
The Great Ormond Street Hospital has declined to comment publicly on the latest allegations levied against the institution by Charlie’s parents.
Charlie Gard was born on August 4, 2016, and at birth, he appeared to be a perfectly healthy newborn. However, eight weeks later, his mother noticed that he didn’t have the muscle tone of other infants his age and took him to the hospital, where his rare type of mitochondrial depletion condition was diagnosed. From then on, his condition rapidly and devastatingly deteriorated, and he has remained at the hospital ever since.
Since, he has suffered irreversible brain damage, gone blind and deaf, cannot move, and has muscles so weak that his lungs can only function with the aid of a ventilator. His parents have argued that their son’s brain damage is not as extensive as doctors have claimed, stating that their son can open his eyes and even “knew his parents were there.”
Doctors and several U.K. and European courts have argued that the parents of Charlie Gard are incorrect, that his condition is profound and irreversible and that prolonging his life with experimental treatment would cause “pain and suffering” and that Charlie would have no quality of life living out his days in a vegetative state.
[Featured Image by Connie Yates/GoFundMe]