Charlie Gard will not die because medicine was not available. He will not die because treatment was attempted, but did not work. He will die because government bureaucrats decided that his life was not worth saving.
There is no nice way to put it- the ironically-named European Court of Human Rights essentially acted as a death panel when they decided to condemn an innocent child to an early demise instead of letting his parents make their own choice and spend their own money on the health of their baby.
According to the Inquisitr, Charlie Gard’s grief-stricken parents, in wake of the revelation that it is now too late for treatment to save their child, have vowed to continue fighting to better the lives of other children with terminal diseases. Although the nature of this assistance is as of yet unclear, one could assume that they are planning on funding an organization that provides research money or facilitates financial accessibility to cutting-edge medical treatments for diseases like Charlie’s mitochondrial DNA depletion syndrome. This is all well and good, but based on the facts of the case, I would argue that the issue that doomed Charlie Gard was not lack of available medicine or lack of funds, it was lack of freedom for Connie Yates and Chris Gard to pursue their treatment of choice for their own child. If Charlie Gard’s parents want justice for their son, they would do best to exert their efforts along political channels, not medical or charitable ones.
Government Tyranny Sentences Innocent Child To Death
When American opponents to the Affordable Care Act (“Obamacare”) used to argue that socialized medicine would lead to “death panels,” many thought their fears to be absurd. But in the case of British child Charlie Gard, this extreme vision has become reality.
England has a socialized medicine system called the National Health Service (NHS) that employs workers in the Great Ormond Street Hospital where Charlie Gard has been treated. Many feel that this hospital held young Charlie hostage while his parents fought to fly the boy to the U.S. to receive experimental treatment for his illness. According to the Inquisitr, Connie Yates and Chris Gard have been fighting this hospital since January for the right to choose- and self-finance- their own son’s medical care. They feel that if they would have been able to treat their child back in January, he would have had a chance to improve, but admit that it is now too late, following reports from a recent brain scan.
These British and European courts have put the Gard family through torture, repeatedly denying the parents hope when they knew a treatment was out there. According to the BBC, Charlie Gard’s parents had to endure rejection from the Family Division of the High Court in London, Court of Appeals, Supreme Court, and European Court of Human Rights, as the case dragged on so long as to render the treatment sought virtually useless. Even after raising over £1.3 million to finance Charlie’s trip and treatment, the socialized medicine and big government systems decided that the ill boy’s parents do not even have the right to spend their own money to seek the care they feel is appropriate for their own child.
Now that it is clear, after too much time has been spent in court, that there is no chance at all for the treatment to work, Charlie’s parents have withdrawn their opposition to the hospital’s determination to take the child off his ventilator, according to the Inquisitr. The doctors plan to remove the equipment, letting the infant suffocate to death.
The U.K. took #CharlieGard hostage, prevented him from being treated, then, after he'd deteriorated, declared treatment futile. Unreal.— Ian Tuttle (@iptuttle) July 24, 2017
“But The Treatment Might Not Have Worked” Is Not An Argument!
The courts’ most heavily relied upon argument for denying Charlie Gard’s parents the right to choose their child’s medical treatment is “well, the treatment might not work.” In this world, nothing is guaranteed. Charlie’s parents knew that. The issue wasn’t whether the treatment would have worked, the issue was whether the parents had a right to try it. Also, in the case of a terminally ill individual, in what world is death a better choice than trying any treatment, no matter how remote the chances of success? Week after week, the news cycle witnessed debates over the medical facets of mitochondrial DNA depletion syndrome and the merits of the experimental treatment- but those who argued over this are completely missing the point. It doesn’t matter whether the treatment was likely to save Charlie or not. The fact is, if the treatment was out there, and the parents had the money, they should be able to try it. That tiny sliver of hope was theirs to do with it what they will. But now, thanks to the morally bankrupt NHS and British court system, that sliver is gone.
The Right Of Parents To Determine Their Child’s Care
A CNN article entitled “Could Charlie Gard’s Case Happen In The United States?” confirms what I have stated about Charlie’s tragic fate- that the issue was never about the merits of the experimental treatment, but rather about the legal rights of parents over their child’s health care.
In England, parents do not have full legal rights to their own children, only a responsibility to care for them, according to University of Cambridge legal scholar Claire Fenton-Glynn. She explains,
“The concept is called parental responsibility: That is, the parent has a responsibility to make decisions, to look after the child…Parenthood doesn’t give them rights; parenthood gives them responsibilities.”
It is precisely this warped view of parental rights that has allowed the hospital and the state to think that they could make decisions for Charlie Gard in the first place. In America, parents have the legal right to seek whatever treatment they deem is appropriate for their children, with few exceptions in the case of negligent parents and when the decision may cause harm. Bioethics lawyer Seema Shah explains that legally U.S parents have “discretion to make decisions…up to the point where their decisions are going to cause harm to their children,” but notes that in practice, “courts are deferring to parents.”
A U.S. example that stands in stark contrast to that of Charlie Gard is the miraculous 2013 case of Jahi McMath, a 13-year-old girl who experienced cardiac arrest and bleeding after a tonsillectomy procedure that left her legally brain-dead. But this tragic turn of events was not the end for Jahi, thanks to the respect that America has for parents’ rights over their children. Dr. John D. Lantos explains:
“All the doctors agreed that (Jahi) met the criteria for being brain-dead…The courts said, ‘Yeah, we respect the doctors’ opinion, but if the parents want to pay for her treatment and take her to a different place, we’ll let ’em.’ And they did. And she is still alive.”
The Tragic Case Of Charlie Gard Touched The World
Over the past few months, everyone from the Pope to President Trump has commented on Charlie Gard. This young boy has started conversations on medical ethics, socialized medicine, the role of the state vs. the role of parents, and so much more. In the wake of this grotesque injustice, these conversations must keep going. The best way to get justice for Charlie Gard is for the people of England, Europe, and across the world to demand an end to laws that privilege the opinions of the state over the determinations of parents with regards to making medical decisions for children. It is a fundamental right for parents to choose medical care for themselves and their children. Without this right, the world will see more tragedies like that of Charlie Gard.
US News And World Report contributor Grazie Pozo Christie aptly describes the state’s use of force in denying Charlie a chance.
“Such use of force is so disturbing it can create a sense of trauma felt by complete strangers across the world.”
I feel that trauma. I have never met Charlie Gard or his parents, but I felt a strong sense of anxiety during the case and feel a strong sense of injustice now. Charlie Gard is not just a baby from England. His case represents the power of the state to control people’s lives- and deaths. If Charlie Gard’s parents want true justice, they must face the root of the problem- the overreaching state- and thrash that root until there is nothing left but the memory of the pain and injustice that it has wrought.
[Featured Image by Matt Dunham/AP Images]