Hos­pice rul­ing for dy­ing U.K. boy

Northwest Arkansas Democrat-Gazette - - INTERNATIONAL - CARO­LINE SPIEZIO In­for­ma­tion for this ar­ti­cle was con­trib­uted by Dan­ica Kirka and Jill Law­less of The As­so­ci­ated Press.

LON­DON — Crit­i­cally ill baby Charlie Gard will be trans­ferred to a hos­pice and taken off life sup­port un­less his par­ents and a hos­pi­tal agree on a plan that could keep the child alive for a bit longer, a Bri­tish judge ruled Wed­nes­day.

High Court Judge Ni­cholas Fran­cis gave 11-month-old Charlie’s par­ents and the hos­pi­tal that has been treat­ing him un­til noon to­day to come to terms on an end-of-life care plan for the in­fant’s fi­nal hours or days.

The baby suf­fers from a rare ge­netic dis­ease, mi­to­chon­drial de­ple­tion syn­drome, which has caused brain dam­age and left him un­able to breathe un­aided. Re­cent tests found Charlie has ir­re­versible mus­cu­lar dam­age.

“It is in Charlie’s best in­ter­ests to be moved to a hos­pice and for him at that point to be moved to a pal­lia­tive-care regime only,” the judge said as a med­i­cal and le­gal bat­tle that has drawn in­ter­na­tional at­ten­tion nears a con­clu­sion.

The par­ents, Connie Yates and Chris Gard, spent months try­ing to per­suade Great Or­mond Street Hos­pi­tal to let Charlie go to the United States for ex­per­i­men­tal treat­ment. They gave up their fight Mon­day, ac­knowl­edg­ing that the win­dow of op­por­tu­nity to help him had closed.

On Tues­day, they said they hoped to take their son, whose birth­day is next week, home to die. Fran­cis said Charlie’s mother and fa­ther now ac­cept that the only op­tions for their son “are the hos­pi­tal or the hos­pice.”

To­day’s dead­line is meant to yield a plan for what hap­pens af­ter the baby is trans­ferred to a hos­pice. The par­ents want him kept on his ven­ti­la­tor for a time. The hos­pi­tal, in fight­ing the par­ents’ ear­lier ef­fort to se­cure ex­per­i­men­tal treat­ment, had in­di­cated that it was re­spon­si­ble for spar­ing Charlie un­nec­es­sary pain.

Fran­cis said that if the par­ties do not reach an agree­ment, Charlie will be taken to hos­pice and the ven­ti­la­tion sys­tem keep­ing him alive will be turned off. He is­sued an or­der bar­ring pub­li­ca­tion of the name of the hos­pice and the date when Charlie is taken there. The judge said it was a “very, very sad con­clu­sion.”

Charlie’s mother left the court­room in dis­tress be­fore the judge gave his rul­ing.

“What if it was your child?” Yates said while sob­bing. As she left, she said, “I hope you are happy with your­selves.”

In con­ced­ing that Charlie would leave the hos­pi­tal for a hos­pice in­stead of home, Yates re­quested a med­i­cal team of her choos­ing that would work to keep her son alive for a week. He is not ex­pected to sur­vive for more than a few hours once his ven­ti­la­tor is re­moved.

The re­quest in­di­cated that the par­ents had backed away from their ear­lier ex­pressed wish to take Charlie home for “a few days of tran­quil­ity” be­fore his ven­ti­la­tor was dis­con­nected and he was al­lowed to “slip away.”

Great Or­mond Street Hos­pi­tal said it was not prac­ti­cal to pro­vide life-sup­port treat­ment for days at the cou­ple’s home. Nurses from the hos­pi­tal nonethe­less have vol­un­teered to care for him in his fi­nal hours. The par­ents’ cause caught the at­ten­tion of U.S. Pres­i­dent Don­ald Trump and Pope Fran­cis and also gar­nered wide­spread grass-roots sup­port. U.S.-based anti-abor­tion ac­tivists have flown to Lon­don to sup­port Charlie’s par­ents.

The case has be­come the cat­a­lyst for dis­cus­sions on health care fund­ing, med­i­cal in­ter­ven­tion, the role of the state and the rights of the child.

The heated com­men­tary has prompted the judge to crit­i­cize the ef­fects of so­cial me­dia and those “who know al­most noth­ing about this case but who feel en­ti­tled to ex­press opin­ions.”

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