By Dan Calabrese ——Bio and Archives--July 6, 2017
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I am under no illusions about Charlie Gard's chances of survival and recovery. They are not good. His parents know that too. And the controversy over his treatment or lack thereof is not about the nature of his prognosis. It is about who has the right to make the decision when to stop trying to save the boy.
To most people with a heart and a brain, that's a very simple matter. The decision belongs to Charlie's parents.
To the ghouls at the British National Health Service and in the European courts, the parents should not be allowed to make the decision because it's better to stop trying to help Charlie and let him "die with dignity."Charlie, who suffers from the rare genetic condition mitochondrial depletion syndrome, is severely brain damaged and has muscle weakness. The unnamed hospital has allegedly offered a new experimental treatment at no cost - if he is granted permission to travel. Charlie suffers from the rare genetic condition mitochondrial depletion syndrome The infant has been at the centre of a lengthy legal battle after doctors at London’s Great Ormond Street Hospital proposed switching his life support machine off.
Charlie’s parents, Connie Yates and Chris Gard, took the hospital to court to challenge the decision, pleading with medics to allow Charlie to undergo a therapy trial in the US. However, the devastated parents lost their fight when the European Court of Human Rights (ECHR) refused to intervene - effectively allowing the machines to be switched off.This is how goulish government-run health care inevitably becomes. Not only do they refuse to treat a patient because the health service has made the arbitrary judgment that he is beyond hope, but they essentially hold the child prison and refuse to allow his parents to remove him from the system and bring him to another system that is willing to help. Speaking of goulishness, the New York Times predictably joins the fray on the side of those who not only want Charlie dead, but attack President Trump and Pope Francis for "making things worse" by wanting to help:
Then Pope Francis and President Trump weighed in, offering statements of support and thrusting a global spotlight onto a heart-rending case that has become a cause célèbre in Britain.
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Their last-minute interventions drew attention to a profoundly difficult bioethical matter, but, experts said, they may have made a tragic situation even worse. Not only has the family exhausted its legal options, but numerous doctors have affirmed that no treatment is likely to reverse the child’s severe brain damage. Those doctors include a neurologist in the United States who had raised the couple’s hopes that an experimental therapy might save their son. Nor is money the main issue, contrary to many of the confusing messages and news reports on the matter. “The tragedy about this case is that the child is dying and there is nothing to stop that, and for a parent that is the worst thing in life,” said Robert D. Truog, a pediatric intensive care doctor at Boston Children’s Hospital and director of the Center for Bioethics at Harvard Medical School. “What the family needs is to come to terms with this and not to be fighting it. The efforts from the pope and Trump are feeding into their denial about what is going on with their child, and that is neither helping them nor the child.” The couple’s lawyers declined to comment on Tuesday, and it was not clear if Ms. Yates or Mr. Gard, or the hospital treating their son, would take action in response to the pope or to Mr. Trump, who on Monday weighed in via Twitter. What is clear — based on a review of the extensive legal record in the case, including statements from numerous medical experts — is that the couple have been through extraordinary ups and downs, even by the standards of other families with terminally ill children.
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