The short, tragic life of Char­lie Gard

Penticton Herald - - OPINION - JIM TAY­LOR

Char­lie Gard didn’t live long enough to cel­e­brate his first birth­day. It would have come this Sun­day. The short­ness of lit­tle Char­lie’s life is a tragedy. But his life it­self was equally a tragedy. Be­cause Char­lie stopped be­ing a baby, and be­came a cause.

Char­lie was born with a rare, in­cur­able, un­treat­able, and al­ways fa­tal, hered­i­tary dis­ease, in­fan­tile on­set mi­to­chon­drial DNA de­ple­tion syn­drome (MMDS). Ac­cord­ing to one news story, only 16 peo­ple in the world have ever had it.

Char­lie didn’t choose it; he didn’t do any­thing to cause it; it just hap­pened.

At the risk of over-sim­pli­fy­ing, hu­man cells have three parts. DNA, the dou­ble-he­lix blue­print in the cell’s nu­cleus. Cy­to­plasm, a jelly-like fluid that repli­cates the pri­mor­dial sea from which we all came. And the cell mem­brane, the sack that holds it all to­gether.

Think of mi­to­chon­dria as fish that swim in that sea, pro­duc­ing en­ergy for the cell’s op­er­a­tion.

Char­lie’s mi­to­chon­dria mal­func­tioned. They couldn’t pro­duce en­ergy for his life.

As Al­heli Pi­cazo ex­plained in Maclean’s mag­a­zine, “MDDS starves Char­lie’s mus­cles, kid­neys and brain of the en­ergy needed to func­tion … Char­lie also suf­fers from fre­quent seizures and has ex­ten­sive, ir­re­versible brain dam­age.”

Doc­tors at Great Or­mond Street Hospi­tal in Lon­don ar­gued that Char­lie should be al­lowed to die. Pal­lia­tive care would make what was left of his life as pain­less as pos­si­ble. They ap­plied for per­mis­sion to have his ven­ti­la­tor switched off.

But Char­lie’s par­ents, Con­nie Yates and Chris Gard, re­fused to ac­cept that he was dy­ing. I can’t blame them for that. I would have done the same. But then Char­lie be­came politi­cized. A neu­rol­o­gist in the U.S. claimed that an ex­per­i­men­tal treat­ment — tried on just nine peo­ple, none with MMDS — might im­prove Char­lie’s chances. Char­lie’s par­ents grabbed at a straw of hope. Sym­pa­thetic crowd-fund­ing raised 1.3 mil­lion pounds to­ward treat­ment in Amer­ica.

Yates and Gard took Char­lie’s case to court. Right up to the Bri­tish Supreme Court, and then to the Euro­pean Court of Hu­man Rights. Four lev­els of courts all ruled in favour of the med­i­cal ev­i­dence.

Then the con­ser­va­tive Chris­tian cau­cus in the U.S. grabbed Char­lie and ran with him. Congress con­sid­ered mak­ing him an hon­orary U.S. cit­i­zen. The Su­san B. An­thony List lob­bied 500,000 mem­bers on his be­half.

Pres­i­dent Don­ald Trump saw po­lit­i­cal ad­van­tage in med­dling in another coun­try’s le­gal sys­tem. “If we can help lit­tle Char­lie Gard … we would be de­lighted to do so,” he tweeted.

Syn­di­cated colum­nist Michael Coren called Trump’s in­ter­ven­tion “Typ­i­cally ir­re­spon­si­ble and in­sen­si­tive … It’s colos­sally ironic that as he re­moves med­i­cal in­surance from mil­lions of Amer­i­cans, the pres­i­dent makes an empty ges­ture to a dy­ing child.”

U.S. evan­gel­i­cal pas­tor Rev. Pa­trick Ma­honey, a fer­vent anti-abor­tion­ist, flew to Lon­don to be­come self-anointed spokesper­son for Char­lie. Pro-life groups pick­eted the hospi­tal. They called the doc­tors “mur­der­ers.”

Staff re­ceived death threats. The term “death pan­els” was bandied about.

Th­ese are the same peo­ple, you may re­call, who de­clared that the Cana­dian med­i­cal sys­tem in­cluded “death pan­els” dur­ing the early de­bates over Oba­macare.

And the same peo­ple who de­mand that all fer­til­ized ova must pro­ceed to birth. Even though in this in­stance — had Char­lie’s dis­abil­ity been di­ag­nosed early enough — an abor­tion might have spared Char­lie and his par­ents a year of agony.

And they’re the same peo­ple who lobby against med­i­cally as­sisted sui­cide for the ter­mi­nally ill. On the grounds that hu­man life is sa­cred. Only God has the right to de­cide when a life should end.

God would have ended Char­lie Gard’s life months ago, if hu­man in­ter­ven­tion had not ar­ti­fi­cially pro­longed it.

They are not, in fact, pro-life at all. They are pro-suf­fer­ing.

They be­lieve in a vin­dic­tive God who doles out re­wards and pun­ish­ments. They’re con­fi­dent they’ll re­ceive the re­wards. But if some­one else is suf­fer­ing, even a one-year-old baby, it must be God’s will.

In the mean­time, the neu­rol­o­gist who started it all ad­mit­ted that the treat­ment he had pro­posed was based only on “a the­o­ret­i­cal sci­en­tific ba­sis.” Given Char­lie’s “cat­a­strophic and ir­re­versible brain dam­age,” he con­ceded it was “un­likely” the ex­per­i­men­tal ther­apy would do any­thing more than “pro­long Char­lie’s suf­fer­ing.”

On Mon­day, Con­nie Yates and Chris Gard rec­og­nized this was no longer about Char­lie’s life. It had be­come what Coren called “a clash of cul­tures.” And so, they an­nounced that they were go­ing to let Char­lie die.

Good for them. And a pox on those who tried to ex­ploit lit­tle Char­lie to sup­port their own ide­olo­gies

Jim Tay­lor is an Okana­gan Cen­tre au­thor and freelance jour­nal­ist. He can be reached at re­write@shaw.ca.

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