Thursday, July 13, 2017


“Power should not be concentrated in the hands of so few, and powerlessness in the hands of so many.”
-           Maggie Kuhn, founder of the Gray Panthers

I can only imagine the agony Chris Gard and Connie Yates, the parents of 11 month old Charlie Gard, must be going through right now. Their child is suffering from a rare genetic disorder that slowly saps the life out of him. His brain cells are dying and he is unable to breathe without the aid of a mechanical ventilator. The British doctors have told the parents they have done all they can and it’s now time to allow Charlie to die with dignity.

Chris and Connie believe there is still hope for Charlie. They have offers of financial support from more than 80,000 donors who have pledged $1.7 million for experimental treatment that is available here in the U.S. They’ve gotten messages of support from the Pope, Donald Trump, and even celebrities like Cher.

Unfortunately, neither the money nor the messages of support may change the outcome. While there is a slender thread of hope in the form of an appeal that is going to be heard on Monday, the 10th, it is just that, a slender thread.

Are Charlie’s parents so desperate to keep Charlie alive they are refusing to see the reality of the situation? No, not at all. They’ve told the hospital that they understand Charlie may die and if that is to be the outcome, they want to take him home to spend what little time is left surrounded by those who love him. Tragically, the hospital has told them they cannot even take Charlie home to be with the parents who love him. They’ve even refused to entertain the possibility of hospice care.

In response to the hospital’s denial of what seems to me to be a reasonable request, Chris poured out his anguish to the Daily Mail – “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.”

Any parent worthy of the title would, or should, feel the same way.

Chris and Connie’s grief has been compounded by the law. When the hospital decided to act without their consent, they filed a legal appeal that made its way to the European Court of Human Rights.

In a ruling that must have pierced like a sword to the heart, the Court ruled in favor of the hospital. Mr. Justice Francis, the presiding judge, put it this way: “Some people may ask why the court has any function in this process; why can the parents not make this decision on their own? The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child's best interests.”

What did the ruling mean to Chris and Connie? It meant they were powerless. In an interview with N.P.R., Dr. Claire Fenton-Glynn, a legal scholar that the University of Cambridge, explained how it works – “Under English law, we don't talk about parental rights. We talk about parental responsibility. We don't say that a parent has a right to make a decision for their child, particularly in the cases of medical treatment.” In cases where the matter is adjudicated, making the decision “doesn’t start with the presumption that the parents are right.”

This is the long and short of it. European law ignores the parents and gives the decision making power to bureaucratic actors who may have other things besides the child’s welfare in mind.

This shift in power from the individual to the state or those acting with state approval are becoming quite common in Europe. In the Netherlands and Belgium, for example, euthanasia is legal, with supposed legal restrictions in place to protect the public. Yet, even with the so-called protections, over 400 Dutch citizens were euthanized without their consent or the consent of their loved ones in 2015 (Wesley Smith – the National Review, July 2017).

The legal door has been opened and it’s going to be almost impossible to close. As British journalist Anne Perkins recently wrote, “The Charlie Gard case is a sad reminder that the law is the preserve of the powerful.”

Thankfully, parents and individuals still have rights here in America. But, will it always be that way or will the powerful find a way to strip us of those rights? I suspect it’s a question we’ll have to one day answer and that day may be coming sooner than we care to believe.

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