The Sadly Pub­lic Last Days of Char­lie Gard

El Dorado News-Times - - Opinion -

Char­lie Gard's par­ents were work­ing on the last ma­jor de­ci­sion they will make for him: how he will die. Chris Gard and Con­nie Yates had given up their fight to se­cure an ef­fec­tive ther­apy for their se­verely brain-dam­aged 11-month-old baby. They've just agreed to have him spend his last days at a hos­pice.

Most par­ents in this sit­u­a­tion would suf­fer un­re­lent­ing an­guish. But the glare of pub­lic­ity beat­ing down this case has mag­ni­fied the trauma. Char­lie has been turned into an in­ter­na­tional cause verg­ing on cir­cus.

The staff at Great Or­mond Street Hospi­tal, which held that it could not help Char­lie, is now re­ceiv­ing death threats. These are peo­ple who strug­gle day in and day out with the stresses of car­ing for sick and dy­ing chil­dren.

Char­lie's par­ents con­demned the at­tacks, not­ing, "We too get abuse and have to en­dure nasty and hurt­ful re­marks on a daily ba­sis." The for­mer an­tag­o­nists now find them­selves vic­tims of warped minds.

Char­lie has a rare ge­netic dis­or­der called en­cep halo my op at hi cm it oc hon dr ialD NA de­ple­tion syn­drome. He can­not open his eyes or move his arms or legs. He can't breathe with­out a ven­ti­la­tor. His heart, liver and kid­neys are dam­aged.

Child deaths used to be com­mon. In early-19th-cen­tury Lon­don, 57 per­cent of chil­dren in work­ing-class fam­i­lies died by the age of 5. Even royal fam­i­lies were not spared. An elab­o­rate set of mourn­ing rit­u­als had been in­vented to ease fam­i­lies through their grief.

Med­i­cal ad­vances have made child deaths far rarer. That's a won­der­ful de­vel­op­ment, of course, but it leaves par­ents whose chil­dren can't be saved feel­ing lone­lier. And the seem­ingly daily pa­rade of med­i­cal mir­a­cles makes them des­per­ate to be­lieve that some­where, there's one for them.

Char­lie's doc­tors at Great Or­mond Street Hospi­tal had de­cided that noth­ing could be done for him. The par­ents, how­ever, wanted Char­lie to un­dergo an ex­per­i­men­tal treat­ment called nu­cle­o­side ther­apy in the United States. They asked Lon­don's High Court to ap­prove that treat­ment.

But the judges held that it would be in Char­lie's best in­ter­ests to die with dig­nity. They said that the doc­tors could with­draw life-sup­port.

Char­lie's par­ents chal­lenged the de­ci­sion, but the Court of Ap­peal up­held it. The same hap­pened at the Supreme Court. The par­ents then went to the Euro­pean Court of Hu­man Rights, which re­fused to get in­volved.

In early pho­tos, Char­lie gives all the ap­pear­ance of be­ing an adorable healthy boy. The mil­lions who saw those im­ages -- and per­haps Char­lie's par­ents, as well -- did not ap­pre­ci­ate the ex­tent of Char­lie's ill­ness.

The pope of­fered to help, and so did Pres­i­dent Trump in a tweet. They should have stayed out of this. The pres­i­dent of the Royal Col­lege of Pae­di­atrics and Child Health called these very pub­lic in­ter­ven­tions "un­help­ful."

In a last-ditch ef­fort, Char­lie's par­ents went back to the High Court to ar­gue for the new ther­apy. The judge said he would con­sider any ev­i­dence that it would work for Char­lie. A few days later, an Amer­i­can spe­cial­ist trav­eled to Lon­don to see whether Char­lie would be a can­di­date for

the ther­apy. An MRI scan re­vealed that he would not be.

The hospi­tal now be­lieves that Char­lie would ob­tain bet­ter care in a hos­pice than at his home. For one thing, the ven­ti­la­tion equip­ment could not fit through the house's front door. That, too, be­came a point of con­tention end­ing in a court­room.

A last point of con­tention was where Char­lie would stay un­til he dies. The par­ents wanted him home. The hospi­tal thought he'd get bet­ter care in a hos­pice. That, too, ended up in court. The par­ents came around to the hospi­tal's view.

The par­ents, the world, are now on a death watch. As for Char­lie, doc­tors don't know whether he is feel­ing pain. To the ex­tent that he is aware of any­thing, Char­lie should know this: He is loved.

Froma Har­rop can be reached on Twit­ter @ Fro­maHar­rop. She can be reached at fhar­rop@gmail.com.

Froma Har­rop

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