Heartbreaker
Charlie Gard breaks our hearts. He’s 11 months old and has been blessed with a loving family. He is a very handsome baby and he was born in the United Kingdom where he can look forward to a level of security and prosperity that much of the world would envy. Yet he has been born with a terrible disease. He has a rare condition called mitochondrial DNA depletion syndrome. The sources of energy in his tissue are failing. His cells can’t produce enough power to survive. The condition is deemed fatal. He breaks our hearts.
Serious childhood illness is one of the toughest things that a caring human being has to come to grips with. And fatal illnesses of childhood even more so. ALL of us feel in our hearts that every child should have a chance at life. A chance to grow. A chance to play. A chance to have fun. A chance to be loved. And a chance to love in return. We’re told that Charlie Gard will never have those chances. He breaks our hearts.
Yes, Charlie Gard breaks our hearts – and we DON’T EVEN KNOW HIM. Imagine what it must be like to be his parents. Imagine the heartbreak, the anguish, the pain. And then imagine that his treatment is suddenly about to be discontinued. Imagine that a series of legal decisions have ORDERED that his life support be withdrawn. And, worse than that, imagine that the courts have blocked a transfer to the United States where he could receive an experimental treatment that has shown promise. And imagine that all parental wishes and decisions have been overridden by that court. Now ask yourself how it can POSSIBLY be that a court comprised of STRANGERS feels that it can step in and override the decisions of loving parents? Ask yourself how on EARTH can this possibly be??!!
Now, I’ll concede that there are times when a court, as an agent of society, must step in to protect a child from parental harm. But those are cases where the parents are found to be either malicious, negligent, or both. Charlie Gard’s parents are neither.
There is a long tradition in common law that maintains that, with rare exceptions, a child’s parents are most able to determine what is and isn’t in their child’s best interests. What HAPPENED to that tradition??!! Why was it disregarded by the courts??!!You would THINK that abandoning such established precedents would only be done for very cogent reasons. What might they be?
Is it the COST? No, in this case it’s not. One million seven hundred thousand dollars has already been raised to pay for treatment. Not a penny of state or taxpayer funds will be required.
Is it because the treatment is futile? No, that’s not it either. There are sound scientific reasons to expect that the proposed nucleoside therapy would be beneficial. (See: “Emerging Therapies For Mitochondrial Disorders”, by Helen Nightengale, et al., Brain, 2016 Jun, 139(6): 1633-1648). And there has been expert court testimony that the child’s EEG shows dysfunction, NOT structural damage, so it might be possible for Charlie to recover brain function. And the proposed nucleoside therapy HAS had partial success stories. (Interested readers should look up the case of Arturito Estopinan). Accordingly Columbia Presbyterian Hospital in New York City has offered to take Charlie Gard on for treatment. By not allowing Columbia to take over Charlie Gard’s treatment, the court seems to take the preposterous position that the doctors at the Great Ormond Street Hospital are highest authority on this disease, when they clearly are NOT.
Is it a concern that the child will be subjected to needless pain and suffering? No, that shouldn’t be, either. The child’s parents as well as a doctor’s court testimony maintain there’s no evidence of pain and suffering. And, in court testimony, it was explained that the proposed treatment, unlike the toxic chemotherapy used to fight cancer, is not painful and has no side effects other that diarrhea.
And, of course, treating Charlie Gard with nucleoside therapy could yield vital information that may help cure future patients as well.
In summary there does NOT seem to be a cogent reason why the decision to withdraw Charlie Gard’s life support has been taken out of the hands of his competent, well informed, and loving parents. It’s possible that there may be a whole other narrative here. It may just be that poor Charlie Gard is merely a stepping stone toward a future in which an all powerful State, using what ever criterion it pleases, will determine which patients to treat and not to treat. And which patients will live and which will die. So, again, Charlie Gard breaks our hearts.