Charlie Gard is an 11-month-old baby in the UK who was born with a terminal mitochondrial disease. It is an inherited chronic illness that is difficult to diagnose and entails a variety of debilitating disabilities that can be physical, developmental, and cognitive. It can stunt growth, pervert muscle development, cause seizures and organ failure. It is an unhappy condition to befall anyone, and those who are afflicted by it have an especially hard time getting the help they need.
In the case of baby Charlie, the condition was so severe that his parents sought an experimental treatment in the US. The Great Ormand Street Hospital in London, where Charlie is receiving care, has denied the wishes of the parents. They have argued that their hands are tied and that they could not agree to the experimental treatment. The lower courts, too, denied the motion brought by the parents. The doctors in the UK concluded that nothing more could be done for Charlie and that the only humane way to proceed was to disconnect the ventilator that was keeping Charlie alive.
On Friday, however, the hospital reversed its decision.
Experimental Treatment for Charlie Gard
“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” the hospital said in the statement. “And we believe, in common with Charlie’s parents, it is right to explore this evidence.”
The option in question is an experimental therapy developed by a neurologist based in the US. Though unlikely, it may help Charlie recover some of his functions despite the fact that it has never been employed for someone with whose case is as severe as Charlie’s.
The Hospital has said that it has not changed its mind about the futility of the effort and that Charlie had already experienced what it called “catastrophic and irreversible brain damage” and that the therapy, known as nucleoside therapy, “would be futile and prolong Charlie’s suffering.” In spite of these admissions, however, it has agreed to let the High Court review the new evidence that speaks in favour of the therapy and decide the case for Charlie’s future.
The Pope and President Trump want to help Charlie Gard
The Pope and President Trump have weighed in on the case, arguing that Charlie had a right to get help and that the US, in the words of President Trump “would be delighted to help.”
Charlie’s mother, Connie Yates, has been grateful for the support. “They are traditional men who believe in the family,” she said of Trump and the Pope. “They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie.”
Some experts have disagreed. Robert Winston, a well-known fertility expert and professor based in the UK, said, “These interferences from the Vatican and from Donald Trump seem to me to be extremely unhelpful and very cruel, actually.”
“This is not an issue about money or resources, but absolutely about what is right for Charlie. They're trying to take an ethical decision based on the judgment of what they know and, ultimately, I think we have to respect what their knowledge is.” He added, “If they say that this mutation is so severe that really this is something which would be even more cruel to have this child travel, that is something which I think one really has to respect.” Winston notes, however, that the parents should ultimately be allowed to decide Charlie’s future.
Legal experts, however, have seemed to agree with the Court. Claire Fenton-Glynn of the University of Cambridge, for instance, has observed that, “The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest.”
Others have disagreed. Kenneth Prager, director of clinical ethics and a professor of medicine at Columbia University, has argued that the wishes of Charlie’s parents should not be taken lightly, for the evidence on Charlie’s condition is sufficiently vague. “Unless the parents are abusive, I think it is dangerous for society to arrogate to itself the power to override parental wishes and have the child die when they are clearly loving parents willing to expend time and resources to help their child.”
And here the issues of consent come alive. Many observers agree that that Charlie’s overall condition is much too degraded and the outlook is too bleak. And yet we ask, why is it that the Hospital gets to decide what is in Charlie’s best interest, irrespective of the consent and wishes of his parents?
Parental Rights vs "The Experts"
Parenthood is not like most other relations between persons. It is privileged both legally and morally as entailing a commitment to letting the parents decide what is in the best interests of their children. There are, to be sure, exceptions. When parents are abusive, society steps in and the courts stipulate that the interests of children sometimes ought to be decided in spite of—or regardless of—the views of the parents.
Yet such circumstances are extremely rare and pertain mostly to abuse and dangerous forms of neglect. The courts do not intervene in households that are not optimal, for instance. They do not go around and correct for simply bad parenting, parents who, for lack of knowledge, make poor decisions for their children. Such powers would be much to be broad, reminiscent of the worst days of paternalistic government. They intervene only in cases of abuse and extreme neglect.
It is clear, however, that Charlie’s parents are not like that. They have campaigned day and night for the interests of baby Charlie and that ought, to a reasonable observer, generate the most profound sense of respect and admiration for them. It should not be set aside and the courts must certainly not allow for a precedent in which they intervene in cases that have nothing at all to do with abuse and extreme negligence.