According to a spokesperson for his parents, terminally ill 11-month-old Charlie Gard is being held “captive” by the British state and the nation’s National Health Service. Little Charlie is at the center of a legal and medical drama that has put parental rights and the “right to die” in direct opposition to one another. Charlie suffers from an exceedingly rare form of mitochondrial depletion syndrome (only 16 cases are known to exist), which has caused profound brain damage, deafness, blindness, and an inability to breathe or eat without the aid of machines.
Doctors at the Great Ormond Street Hospital, which has been overseeing the care of Charlie Gard since he was diagnosed at roughly 8-weeks-old, has argued in court that Charlie’s continued existence amounts to little more than needless pain and suffering. Multiple courts in the UK and Europe have ruled that Charlie has the “right to die” and that doctors have the right to remove him from life support to end the needless suffering he’s enduring.
Against his parents’ wishes.
Because, contrary to the opinion of his doctors, the parents of Charlie Gard want their son to keep fighting. They have raised over £1.3 million on GoFundMe to bring the baby to the United States to receive experimental treatment.
Charlie’s doctors and the courts, however, have repeatedly denied Chris Gard and Connie Yates the opportunity to bring Charlie to America, claiming that the virtually untested treatment cannot improve Charlie’s condition. Even if it’s successful, it will not reverse his brain damage and can never improve his quality of life.
On June 27, the European Court of Human Rights declined to hear Charlie Gard’s parents’ final appeal, and it was expected that the 11-month-old would be removed from life support within days. In response to pleas from his parents asking for “a little more time,” withdrawal of life support was delayed. However, the Great Ormond Street Hospital denied Charlie’s parents’ request to take their son home to die.
On July 10, Charlie Gard’s legal team was granted a new hearing by the High Court in London. Mr. Justice Francis, who ruled months ago that little Charlie should be allowed to “die with dignity,” gave Charlie’s parents just under 48 hours to provide the court with new evidence that the experimental American treatment they are seeking for their son will be effective. The couple had been asking for two weeks, but according to doctors caring for Charlie Gard, that length of time is “unfair to Charlie.” Doctors and staff at the Great Ormond Street Hospital argued that prolonging the moment of his death is “desperately unfair” to Charlie.
“Staff feel it is desperately unfair to Charlie… week after week knowing that every step they take for Charlie is against his welfare.”
Yeah we support the baby, but how much suffering do you want him to go through. Very tough decision!
— Thomas Nimeh (@Thomas030) July 12, 2017
— Melia Windsor (@Nadalena) July 12, 2017
Say what you want, but nothing justifies not wanting to give a baby a chance. #CharlieGard is a human being, he has the right to live!
— connie morales (@conniemorales15) July 10, 2017
— kim powrie (@radgirl08) July 10, 2017
A ruling on the new evidence, presented to the High Court on Wednesday, is slated for Thursday, July 13. Mr. Judge Francis said during Monday’s hearing that the parents of Charlie Gard will need to demonstrate that something “new or dramatic” has changed in the case.
“You are going to have to persuade me that something new or dramatic has changed.”
An attorney for Great Ormond Street Hospital argued that some of the evidence cited by Charlie’s parents and legal team is not new at all.
The Independent reports that, as the people pulling for Charlie Gard wait for the final ruling by the High Court, family spokesman Alasdair Seton-Marsden said during an interview that with Fox News that Charlie is being “held as a captive,” blaming both the British state and its socialized health care system for the baby’s fate.
— Ainsley Earhardt (@ainsleyearhardt) July 12, 2017
“Had they been wealthy parents, and gone to a private hospital, and said… now we would like to go and try this other hospital elsewhere, this wouldn’t raise an issue. Charlie is effectively being held as a captive. They [his parents] have been told they can’t even take him home to die and they cannot fly him to America…So literally, he is being held captive by effectively the British state and the British national health system.”
Medical professionals at the Great Ormond Street Hospital have an entirely different view of the matter, reports The Washington Post. In a statement, Charlie Gard’s doctors lamented his fate, but blasted the proposed experimental treatment (which hasn’t even been tested on mice) as something that would only “prolong Charlie’s suffering.” According to the hospital, it’s not about money (which Charlie’s parents have raised), but rather about doing “what is right for Charlie.”
“Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified. Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.”
In recent days and weeks, the case of Charlie Gard has garnered international attention, with everyone from Donald Trump to the Pope coming forward with offers of aid for the terminal infant. However, according to his doctors, there is no treatment or therapy available that can undo the damage that’s already been done.
It is unknown whether the parents of Charlie Gard are planning to continue their legal battle for his life if the High Court and Mr. Justice Francis once again deny their request to bring him to the United States for treatment.
[Featured Image by Connie Yates/GoFundMe]