NYT Locates the Real Tragedies in Charlie Gard Case: Trump, Pope, U.S. Individualism

July 6th, 2017 6:54 AM

In Wednesday’s New York Times, Dan Bilefsky and Sewell Chan reported from London on the tragic medical and legal controversy around the infant Charlie Gard: “Baby’s Illness Grows Tragic on Global Stage.” The text box declared the science settled, and the opinion of world leaders that the baby’s life should be fought for a mere nuisance that promises to make things worse: “Support from the pope and President Trump may give parents irrational hope.”

Katie Yoder set up the sad situation: “11-month-old Charlie could lose life support any day now due to the European Court of Human Rights’ decision “in Charlie’s best interests.” Shortly after his birth, Charlie was diagnosed with infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). The rare genetic condition and brain damage has left Charlie deaf and blind, subject to seizures and unable to move his limbs or breathe on his own. After his doctors suggested removing Charlie’s ventilator, parents Chris Gard and Connie Yates sought legal permission to bring their baby to the U.S. for experimental therapy. But court after court sided with Charlie’s doctors at London’s Great Ormond Street Hospital. And, last week, the parents lost their final legal appeal, despite raising £1.3 million on a crowdfunding site to pay for Charlie’s treatment.”

The Times’ loaded language made its feelings clear: Pull the plug and get it over with:

The long journey for Connie Yates and Chris Gard, whose infant son, Charlie, cannot breathe or move on his own, appeared to have come to an end last week. The courts had ruled that the baby’s rare genetic condition was incurable and that the only humane option was to take him off life support. The couple announced that they were getting ready “to say the final goodbye.”

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.

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.

Trust the Times to give you the story straight, the reporters unconvincingly argue.

Nor is money the main issue, contrary to many of the confusing messages and news reports on the matter....

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....

Charlie Gard, born on Aug. 4, 2016, was a few weeks old when his parents noticed that he had trouble lifting his head. He was not growing and had to be put on a feeding tube. His breathing became shallow. On Oct. 11 he was admitted to Great Ormond Street Hospital in London, where he has lived ever since....

Great Ormond Street Hospital was initially open to the idea, but then Charlie began to experience severe seizures, leading to a diagnosis of epileptic encephalopathy, a severe brain disorder. With that, doctors concluded that nucleoside therapy would only prolong the child’s suffering.

The reporters buried an intriguing counter-case where the authorities were appallingly wrong about a supposedly hopeless case.

The parents appealed, citing the case of Ashya King, a boy with a brain tumor whose British parents took him to the Continent, spurring a widely publicized manhunt in 2014, after a British hospital declined to send him to Prague for an experimental radiotherapy. The parents were arrested and brought back to Britain. (In the end, the hospital agreed to allow him to go to Prague for treatment, and he survived.)

An appellate judge, Lord Justice Andrew McFarlane, found that the King case was exceptional because that boy’s parents had put forward a “viable alternative treatment option,” which he said Charlie’s parents had not done. He praised their “composure, focus and dignity,” but upheld Justice Francis’s ruling. Britain’s highest court agreed, as did the European Court of Human Rights, in a judgment on June 27.

At this point, medical and ethical experts say, the few avenues to treatment for Charlie appear to be closed, and it seems to be just a matter of time before his parents accept that there is nothing more to be done.

Quite easy for them to say, isn’t it?

“The case has gone through the courts, and it is over,” said Claire Fenton-Glynn, a legal scholar at the University of Cambridge who has studied the case. “This is prolonging the agony of a devastating situation.”

Freedom of movement and Individual initiative, like parents trying desperately to save the life of a child, is treated with suspicion at Times HQ, especially when it threatens to cost money, even other people’s money -- one of the few instances of the New York Times supporting fiscal conservatism:

Professor Truog, of Harvard Medical School, noted that the United States was generally more individualistic than Britain. As a result, people tend to be more open to the idea of taking heroic -- and frequently quite expensive -- long-shot measures, making these sorts of “end of life” ethical disputes a familiar aspect of medicine in the United States.

“Quite expensive” is the key phrase. The New York Times has previously run callous, cynical stories cynically trying to nudge people into self-rationing for the sake of saving money for the state. For example: Criticizing life-enhancing heart valves for the old and “frail” as a waste of money, and coming out against "wasteful" medicines and "expensive" new medical procedures that are only worth "a few months" of extra life in the name of universal health care coverage, as if softening up the citizenry into accepting future limits on care to keep down costs.