Par­ents agree to let ill baby die

In court, they with­draw le­gal bid to send Char­lie to U.S.

Northwest Arkansas Democrat-Gazette - - NEWS - CARO­LINE SPIEZIO, JILL LAW­LESS AND DAN­ICA KIRKA

LON­DON — The par­ents of Char­lie Gard, whose bat­tle to get their crit­i­cally ill baby ex­per­i­men­tal treat­ment stirred in­ter­na­tional sym­pa­thy and con­tro­versy, dropped their le­gal ef­fort Mon­day, say­ing tear­fully that it was time to let their son die.

At an emo­tional court hear­ing, a lawyer for the baby’s par­ents, Chris Gard and Con­nie Yates, said the cou­ple was with­draw­ing a bid to have Char­lie sent to the United States, where a doc­tor had of­fered to try to treat his rare ge­netic con­di­tion. The de­ci­sion came af­ter new med­i­cal tests showed the 11-month-old, who has brain dam­age and can­not breathe un­aided, had ir­re­versible mus­cu­lar dam­age.

Both par­ents wept in the packed court­room at the High Court in Lon­don as lawyer Grant Arm­strong made the an­nounce­ment, his voice break­ing.

“This case is now about time,” Arm­strong said. “Sadly, time has run out.”

Out­side court, Chris Gard said that Char­lie “won’t make his first birth­day in just un­der two weeks’ time.”

“We are about to do the hard­est thing that we will ever have to do, which is to let our beau­ti­ful lit­tle Char­lie go,” he said.

Gard and Yates, who are in their 30s and from Lon­don, have fought fe­ro­ciously for their son, who was born in Au­gust 2016 with mi­to­chon­drial de­ple­tion syn­drome, a rare ge­netic dis­ease.

The baby has been treated at Great Or­mond Street Hos­pi­tal in Lon­don, one of the world’s lead­ing chil­dren’s hos­pi­tals. Doc­tors there say Char­lie is in pain and fur­ther treat­ment would only in­crease his suf­fer­ing. They have sought per­mis­sion from the courts to switch off his life sup­port and al­low him to die peace­fully. His par­ents have re­sisted, ar­gu­ing that an ex­per­i­men­tal treat­ment could ex­tend and im­prove Char­lie’s life.

The case gained in­ter­na­tional at­ten­tion af­ter Char­lie’s par­ents re­ceived sup­port from Pope Fran­cis, U.S. Pres­i­dent Don­ald Trump and some mem­bers of the U.S. Congress.

On Mon­day, the Vat­i­can said Pope Fran­cis was pray­ing for Char­lie and his par­ents, and urged the faith­ful to join him in prayer so that the baby’s par­ents “may find God’s con­so­la­tion and love.

As the le­gal bat­tle dragged on, U.S.-based pro-life ac­tivists had flown to Lon­don to sup­port Char­lie’s par­ents, and the case be­came a flash point for op­pos­ing views on health-care fund­ing, med­i­cal in­ter­ven­tion, the role of the state and the rights of the child.

Pas­sions have of­ten run high, with ac­tivists de­mand­ing “jus­tice for Char­lie” ral­ly­ing out­side the High Court and Great Or­mond Street Hos­pi­tal. Over the week­end, the hos­pi­tal said it had con­tacted po­lice af­ter staff re­ceived abuse and threats.

Char­lie’s par­ents con­demned the abuse, and on Mon­day thanked the hos­pi­tal for the care it had given their child.

Some com­men­ta­tors por­trayed the case as a clash be­tween fam­ily and the state, and U.S. con­ser­va­tives used it to crit­i­cize Bri­tain’s govern­ment-funded health care sys­tem — even though the case was never about money.

Judge Ni­cholas Fran­cis crit­i­cized those “who know al­most noth­ing about this case but who feel en­ti­tled to ex­press opin­ions.”

At its heart, the case pit­ted the right of par­ents to de­cide what’s best for their chil­dren against the au­thor­i­ties’ re­spon­si­bil­ity to up­hold the rights of peo­ple who can’t speak for them­selves.

Un­der Bri­tish law, chil­dren have rights in­de­pen­dent of their par­ents, and it is usual for courts to in­ter­vene when par­ents and doc­tors dis­agree on the treat­ment of a child — such as cases where a par­ent’s re­li­gious be­liefs pro­hibit blood trans­fu­sions.

Bri­tish courts and the Euro­pean Court of Hu­man Rights all ruled against Char­lie’s par­ents and in fa­vor of Great Or­mond Street. The case re­turned to court this month when the hos­pi­tal asked the judge to re­assess the pos­si­ble ben­e­fits of a treat­ment pi­o­neered by Dr. Mi­chio Hi­rano, a neu­rol­ogy ex­pert from Columbia Med­i­cal Cen­ter in New York.

At a hear­ing ear­lier this month, Hi­rano said there was a 10 per­cent chance of a sig­nif­i­cant im­prove­ment in Char­lie’s mus­cle use with the treat­ment, known as nu­cle­o­side ther­apy. But he con­ceded it had never been tried on a hu­man with Char­lie’s ex­act con­di­tion and no tests had ever been done on mice to see whether it would work on a pa­tient like Char­lie.

Hi­rano came to Lon­don last week to ex­am­ine Char­lie along with other ex­perts. Af­ter see­ing the re­sults of new tests, the baby’s par­ents agreed to drop their case, mean­ing Char­lie’s life sup­port can now be re­moved.

But they still be­lieve Char­lie could have been saved had months not been spent in le­gal wran­gling about whether he should get treat­ment.

“Had Char­lie been given the treat­ment sooner he would have had the po­ten­tial to be a nor­mal, healthy lit­tle boy,” Yates told the court.

“Our son has an ex­tremely rare dis­ease for which there is no ac­cepted cure, but that does not mean that this treat­ment would not have worked, and it cer­tainly does not mean that this shouldn’t have been tried.”

The hos­pi­tal dis­agreed. Its lawyer, Katie Gol­lop, said Char­lie had suf­fered “ir­re­versible neu­ro­log­i­cal dam­age” and the treat­ment would have been “fu­tile.” She said the hos­pi­tal stood by its be­lief that Char­lie was in pain.

“At the first hear­ing in Char­lie’s case in March, (Great Or­mond Street Hos­pi­tal’s) po­si­tion was that ev­ery day that passed was a day that was not in his best in­ter­ests,” Gol­lop said in a writ­ten state­ment. “That re­mains its view of his wel­fare.”

The hos­pi­tal also crit­i­cized Hi­rano, say­ing that he had given ev­i­dence to court with­out hav­ing read pre­vi­ous judg­ments or Char­lie’s med­i­cal records. And it noted that Hi­rano had told the court that he “re­tains a fi­nan­cial in­ter­est in some of the … com­pounds he pro­posed pre­scrib­ing for Char­lie.”

End­ing a case he called tragic for all in­volved, the judge paid trib­ute to Char­lie’s par­ents, say­ing it was im­pos­si­ble to com­pre­hend the agony they faced.

“No par­ent could have done more for their child,” he said.

Yates cried as she told the court she and Char­lie’s fa­ther had only wanted the best for their son.

“We are so sorry that we couldn’t save you,” she said.

AP/CARO­LINE SPIEZIO

Sup­port­ers of crit­i­cally ill baby Char­lie Gard wait out­side the High Court in Lon­don af­ter his par­ents Con­nie Yates and Chris Gard spoke Mon­day.

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