By Dave Andrusko
Never for one second will we allow our laser-like focus on little Charlie Gard to be diverted. As we reported earlier today, a highly unsympathetic judge gave Connie Yates and Chris Gard two days to give him evidence Charlie can benefit from experimental therapy.
Given Judge Nicholas Francis’s previous comment–that it would take something “dramatic and new” to convince him that death was not in Charlie’s “best interest–and the hospital’s resolute opposition to allowing Charlie to go overseas for experimental therapy, we know that the odds are still stacked against the 11-month-old who suffers from encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), a devastating chromosomal disorder.
However, like you and like his tremendous parents, I refuse to give up. The supportive comments of President Trump and Pope Francis changed the trajectory which was headed inexorably towards disconnecting Charlie’s ventilator. The entire world now knows about this little boy and the ugly side of pro-withdrawal discussion–not that Charlie will die but that he will live a life whose quality they do not respect.
Having said that, let me add a few additional thoughts to place this worldwide battle in context.
1. Nobody is saying that Charlie will be cured. The parents are confident, based on input from seven specialists Connie says are supporting them in their fight to try experimental therapy, that they “could reduce the effects of the disease,” as BBC Health Correspondent Nick Triggle described it. If they take Charlie to the United States, his condition does not improve and he is pain (which the hospital and judges admit they cannot prove)–Connie said, “we would let him go. This isn’t about us. This is about Charlie and giving him the chance he needs.”
2.This case is about parents whose concern for their son and their incredible dedication no one is challenging. However the London-based hospital–backed by three courts in England and the European Court of Human Rights–says it knows what is best for Connie’s and Chris’ son. And that “best” is death.
You can fully empathize with Connie when she told BBC Breakfast the situation was a “living hell”:
“I couldn’t sit there and watch him in pain and suffering, I promise you I wouldn’t,” she said, adding: “I think parents know when their children are ready to go and they’ve given up, and Charlie is still fighting. “It’s horrible that this decision has been taken out of our hands. It’s not just about us knowing best, it’s about having other hospitals and doctors saying we want to treat [Charlie] and we think it’s the best thing to do.”
So why would the Great Ormond Street Hospital (GOSH) seemingly reverse course at the 11th hour and tell Judge Francis last Friday he should hear new evidence? Here is the positive view, from the Telegraph:
“The hospital’s decision to go back into the courtroom came after two international healthcare facilities and their researchers contacted them to say they have ‘fresh evidence about their proposed experimental treatment.”
But GOSH insists they have already explored nucleoside therapy, which while it has worked in other cases, will not benefit Charlie–at least according to GOSH. So the hospital likely felt confident asking Judge Francis to look at “new evidence” which GOSH is already telling him isn’t new and won’t work. There’s an acronym for that.
3. How can any hospital make such unilateral decisions over strenuous parental objections? A Chicago Tribune editorial, which was not particularly sympathetic to Charlie’s parents, put it this way:
Why does the British government have such wide authority over Charlie’s treatment? One big reason: Because the government funds a single-payer health system, picking up medical costs for British citizens.
“Who pays the piper calls the tune,” as the old saying goes. Never mind that it is not the massive National Health Service medical bureaucracy paying the piper but taxpayers.
4. As we discussed earlier today [“British judge sets Thursday as date for hearing for little Charlie Gard,” the global response, highlighted by the supportive tweets of Pope Francis and President Trump (“If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so”), is a source of great encouragement and hope for Charlie. I have no illusions that GOSH harbors he least doubt about its conclusion that killing Charlie is in his “best interest.” You read biomedical journals or any of the many posts Wesley J. Smith writes about what is contained in them, and you are not the least bit surprised.
Consider this quote from a BBC story which (beyond normal human sympathies) explains so much of why little Charlie has touched such a chord:
“GOSH describes proposed experimental therapies as ‘unjustified’ and said the treatments being offered are not a cure.”
This incredible response raises at least two fundamental questions: If Charlie can’t be “cured,” he can be killed? And whose child is Charlie’s?
We can only hope that Judge Francis moves beyond judiciary arrogance and fairly and honestly asks himself these questions.
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