Charlie Gard is a ten-month-old British boy who is essentially being held captive by a British hospital and the head scratching English healthcare laws. Prime Minister Theresa May has expressed her confidence in the Great Ormond Street Hospital in London which refuses to relinquish the dying child to his parents so they may seek other care. The European Court of Human Rights has concluded that further attempts to save little Charlie’s life would cause “significant harm” refusing to acknowledge the parents’ rights to care for their child as they see fit. Robert Winston, a British geneticist, termed the Vatican and President Trump’s attempts to prolong the baby’s life as “extremely unhelpful and very cruel.” What is the matter with these people?!
Little Charlie has Mitochondrial Depletion Syndrome. Like all forms of Mitochondrial Disease (Mito), there is no cure for it. Unfortunately, it is one of the rarest forms of Mito. It is also one that comes with a death sentence. Currently, the United Kingdom offers no treatment options, experimental or otherwise, for this type of Mito. However, the United States does.
Charlie’s parents have raised over a million dollars to cover treatment and travel to the U.S. in a desperate attempt to prolong their child’s life. The hospital, however, has determined the parents are not deserving of more time with their child and the time has come to literally pull the plug. The defense for such callousness? So, Charlie can die with dignity. For reasons no normal thinking, compassionate human being can fathom the U.K.’s healthcare laws allow doctors to override parents. In combination with the courts, they wield the power to force parents to watch the death of their child rather than seek outside help. It is incomprehensible.
Charlie’s life will likely not be saved by the experimental treatment. However, it is likely to extend his life. As his parents, they should have the right to choose the option that will keep him alive longer. What parent would not want to absorb every second of every minute you possibly could with your child? It is a great atrocity that anyone wields more power than the parents over a child who is not yet two. What right do they have to hold these parents hostage in the U.K. and refuse to allow treatments in other countries? The treatment isn’t available in the U.K. and the parents have raised enough money that no one in the U.K., hospital, health insurance carrier, government, etc., will be out of money. The only price to be paid is by the parents who will be forced to watch their child die.
Charlie’s case is the most extensive example of government overreach I have ever seen. We all should be leery of a government who has the unequivocal right to determine when our children die. Not only do they have that right but they go to such extensive lengths to enforce it. It seems as though all the British powers-that-be with a say in Charlie’s case have abandoned all sense of empathy and compassion. Or perhaps they’re pushing for Charlie’s death for their own personal gain.
Interestingly, the British hospital has repeatedly stated how the U.S. hospital doesn’t have experience dealing with this type of Mito like they do. Considering there are only a handful of these types of Mito cases that’s not surprising. The British hospital continually presents themselves as the experts. Yet, they don’t offer the experimental treatment. Perhaps, I’m wrong but it appears to me that the U.K. is more interested in maintaining their “expert” status than they are actually helping this family.
Furthermore, by refusing to allow Charlie to be treated these “experts” are causing irreparable harm to countless parents and patients around the world. The experimental procedures will likely not save Charlie. But how he responds to it and what the medical professionals learn from it could save the lives of others living with Mito. Others, like my son DJ who don’t have the same Mito as Charlie but whose life could certainly be improved by any new knowledge about the disease.
Both the Vatican and President Trump recognize the significance of not just prolonging Charlie’s life but of the potential to save and improve the lives of others. That is why they have reached out to our English counterparts. But their humanitarian efforts were not only rebuffed but called “very cruel.” How odd that for all of their propriety and propensity of presenting good that those in the United Kingdom have failed the common good of everybody.