Baby boy at cen­tre of le­gal bat­tle dies

Penticton Herald - - WORLD -

LON­DON — Char­lie Gard, the ter­mi­nally ill Bri­tish baby at the cen­tre of a le­gal and eth­i­cal bat­tle that at­tracted the at­ten­tion of Pope Fran­cis and U.S. Pres­i­dent Don­ald Trump, died Fri­day. He was one week shy of his first birth­day.

Char­lie’s par­ents fought for the right to take him to the United States for an ex­per­i­men­tal med­i­cal treat­ment for his rare ge­netic dis­ease, mi­to­chon­drial de­ple­tion syn­drome, which left him brain dam­aged and un­able to breathe un­aided. His case ended up in the courts when doc­tors op­posed the plan, say­ing the untested ther­apy wouldn’t help Char­lie and might cause him to suf­fer.

A fam­ily spokes­woman, Ali­son Smith-Squire, con­firmed Char­lie’s death on Fri­day, a day af­ter a judge or­dered that he be taken off a ven­ti­la­tor at the Great Or­mond Street Hospi­tal in Lon­don and moved to an undis­closed hos­pice for his fi­nal hours.

“Our beau­ti­ful lit­tle boy has gone, we’re so proud of him,” his mother, Con­nie Yates, said in a state­ment.

Char­lie was seem­ingly healthy at birth, but soon be­gan to weaken. He was ad­mit­ted to Great Or­mond Street Hospi­tal, Bri­tain’s pre­mier chil­dren’s hospi­tal, when he was two months old and re­mained there un­til al­most the end of his life.

His le­gal case be­came a flash­point for de­bates on the rights of chil­dren and par­ents, on health­care fund­ing, med­i­cal in­ter­ven­tions, the re­spon­si­bil­i­ties of hos­pi­tals and med­i­cal work­ers and the role of the state. It gained in­ter­na­tional at­ten­tion last month when Pope Fran­cis and Pres­i­dent Trump ex­pressed their sup­port for Char­lie and his fam­ily.

The in­ter­ven­tion of two of the world’s most pow­er­ful men made the case a world­wide talking point. Im­ages of Char­lie hooked to a tube while doz­ing peace­fully in a star-flecked navy blue one­sie graced web­sites, news­pa­pers and tele­vi­sion news pro­grams.

The pope re­acted quickly to the news of Char­lie’s death, tweet­ing late Fri­day “I en­trust lit­tle Char­lie to the Fa­ther and pray for his par­ents and all those who loved him.”

U.S. Vice-Pres­i­dent Mike Pence tweeted “Sad­dened to hear of the pass­ing of Char­lie Gard. Karen & I of­fer our prayers & con­do­lences to his lov­ing par­ents dur­ing this dif­fi­cult time.”

Char­lie’s par­ents raised more than 1.3 mil­lion pounds ($1.7 mil­lion) to pay for the ex­per­i­men­tal treat­ment they be­lieved could pro­long his life. But Bri­tish courts con­sis­tently ac­cepted the hospi­tal’s po­si­tion, rul­ing that it was in Char­lie’s best in­ter­ests that he be al­lowed to die.

Af­ter months of le­gal bat­tles, High Court judge Ni­cholas Fran­cis ruled Thurs­day that Char­lie should be trans­ferred to a hos­pice and taken off life sup­port af­ter his par­ents and the hospi­tal failed to agree on an end-of-life care plan.

Un­der Bri­tish law, it is com­mon for courts to in­ter­vene when par­ents and doc­tors dis­agree on the treat­ment of a child. In such cases, the rights of the child take pri­macy over the par­ents’ right to de­cide what’s best for their off­spring. The prin­ci­ple ap­plies even in cases where par­ents have an al­ter­na­tive point of view, such as when re­li­gious be­liefs pro­hibit blood trans­fu­sions.

The case made it all the way to Bri­tain’s Supreme Court as Char­lie’s par­ents re­fused to ac­cept ear­lier rul­ings.

Of­fers of help for Char­lie came from Dr. Mi­chio Hi­rano, a neu­rol­ogy ex­pert at New York’s Columbia Med­i­cal Cen­ter, and from the Vat­i­can’s Bam­bino Gesu pe­di­atric hospi­tal. Both said an ex­per­i­men­tal treat­ment known as nu­cle­o­side ther­apy had a chance of help­ing Char­lie.

Great Or­mond Street Hospi­tal dis­agreed. It said the pro­posed treat­ment had never been tried on some­one with Char­lie’s con­di­tion and no tests had even been done on mice to see whether it would work on a pa­tient like Char­lie.

The As­so­ci­ated Press

Sick 11-month old baby Char­lie Gard lies in a bed at Great Or­mond Street Hospi­tal in Lon­don. Bri­tish me­dia are re­port­ing a fam­ily an­nounce­ment that baby Char­lie died on Fri­day.

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