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NY Times attempts to undermine medical justification for treating Charlie Gard

Jul 7, 2017

By Dave Andrusko

Chris Gard and Connie Yates with Charlie (Photo: PA/PA Wire)

Chris Gard and Connie Yates with Charlie
(Photo: PA/PA Wire)

Without access to the information gathered by the New York Times’ Dan Bilefsy and Sewell Chan, it’s not possible to rebut the characterizations they make of the “curious role” played by a neurologist in the United States in the case of little Charlie Gard.

But let’s see what we can deduce from “U.S. Doctor Fueled Hopes of Ailing British Infant’s Parents.”

First, this is the New York Times we are talking about. How sympathetic do you think its coverage will be of Connie Yates’ and Chris Gard’s desperate, full-court press to save their 11-month-old son whom the hospital in which he has been a patient since October has decided is better off dead?

Not very. Having said that…

[1] We are to believe that this neurologist, identified only as “Dr. I.,” has blown hot and cold in his predictions about how much good an experimental therapy he pioneered will do Charlie. As NRL News Today readers know well, Charlie suffers from Mitochondrial Depletion Syndrome (MDS), a severely debilitating chromosomal condition which is almost always fatal.

But without more than just a brief quote or paraphrase from various statements Dr. I. supposedly made, we simply don’t know how consistent he has been and/or whether he was responding to new information.

[2] Preventing further “pain and suffering” is a key justification the hospital offers to take away Charlie’s life support. But as Bilefsy and Chan mention almost in passing, “’No one can be certain whether or not Charlie feels pain,’ a judge found on April 11.”

That, however, didn’t prevent that judge from ruling “it would be in the boy’s best interests ‘to let him slip away peacefully and not put him through more pain and suffering.’”

[3] If any further treatment is futile, why would “New York-Presbyterian Hospital/Columbia University Medical Center reiterate an offer to treat the child, either as an inpatient in New York or by shipping the unapproved drug for the experimental treatment to the hospital in London”?

This is not some fly-by-night, two-bit hospital. Why would it put its reputation on the line if it didn’t believe there was a chance nucleoside therapy might help Charlie?

[4] Dr. I. and New York-Presbyterian Hospital/Columbia University Medical Center are not the only medical voices speaking out on behalf of treating Charlie. “Ms. Yates told ITV on Friday that five doctors who specialize in Charlie’s disease — two in England, one in Italy, one in Spain and one in the United States — said they believed that the experimental treatment could work.”

Does the article rebut this? No. The reporters choose to take Connie’s statement–“There’s around a 10 percent chance of this [the therapy] working for Charlie”–and archly observe, “she did not explain how she had arrived at that estimate.”

Maybe she wasn’t asked.

One more.

#5. Bilefsy and Chan trot out a legal scholar who pronounces that “The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest.”

But, of course, that isn’t the “central issue.”

The central issue is set out clearly in this quote that comes near the very end:

Kenneth Prager, a professor of medicine and director of clinical ethics at Columbia University, who is not involved in the case, disagreed. The evidence on pain is unclear, he said, and the parents’ wishes should be paramount. “Unless the parents are abusive, I think it is dangerous for society to arrogate to itself the power to override parental wishes and have the child die when they are clearly loving parents willing to expend time and resources to help their child,” he said.

Categories: Infants