Fight over for Char­lie Gard

Le­gal bat­tle ends as par­ents agree to stop life sup­port for their son

The Guardian Weekly - - Uk News - Ha­roon Sid­dique Sarah Bose­ley

Char­lie Gard’s par­ents have ended their le­gal fight for their crit­i­cally ill baby to be flown to the US for ex­per­i­men­tal treat­ment, say­ing it was too late for the process to work.

Af­ter a five-month court bat­tle, Chris Gard and Con­nie Yates said at an emo­tional hear­ing on Mon­day that they were aban­don­ing their fight for their son to re­ceive the nu­cle­o­side by­pass ther­apy (NBT) they hoped would bring about sig­nif­i­cant re­cov­ery. Their de­ci­sion means that Char­lie, who was born on 4 Au­gust last year with a rare in­her­ited ge­netic con­di­tion, was ex­pected to be re­moved soon from life sup­port at Great Or­mond Street hos­pi­tal (Gosh) and will not live to see his first birth­day.

Af­ter Grant Arm­strong, act­ing for Char­lie’s par­ents, shocked the packed court­room in cen­tral Lon­don by say­ing that ow­ing to “ex­ten­sive muscle at­ro­phy” they be­lieved he no longer had any prospect of en­joy­ing a “mean­ing­ful life”, the baby’s mother read a state­ment.

As she tear­fully paid tribute to the cou­ple’s son from the wit­ness stand and in­sisted that they had only done what any par­ent would do, friends, fam­ily, lawyers and mem­bers of the press also wept.

The hos­pi­tal later at­tacked US neu­rol­ogy pro­fes­sor Mi­chio Hi­rano, who had led Char­lie’s par­ents to be­lieve he could be treated. In a state­ment it said Gosh had shared their hopes when Hi­rano said he had new ev­i­dence that Char­lie might ben­e­fit from NBT.

But it added that they had learned with “sur­prise and dis­ap­point­ment” last week that he had not looked at the child’s brain scans, and not read the med­i­cal notes, other ex­pert opin­ions or the judg­ment of the court. It added that Hi­rano “re­tains a fi­nan­cial in­ter­est in some of the NBT com­pounds he pro­posed pre­scrib­ing for Char­lie”.

In court, Yates spoke of the cou­ple’s ef­forts to save their son. Arm­strong, who was also in tears as he ad­dressed the court, said at the hear­ing’s con­clu­sion: “It doesn’t get rawer than that.”

Emo­tions were also high out­side the Royal Courts of Jus­tice in Lon­don, when the news fil­tered out. There was anger and tears among pro­test­ers who have kept up a noisy vigil with peo­ple chant­ing “shame on you, judge” and “shame on Gosh”. Mem­bers of US pro­life groups who flew over to side with Char­lie’s par­ents could be seen hold­ing hands and pray­ing.

In the state­ment read in court, the par­ents paid tribute to the “se­cond-tonone” care for Char­lie at Gosh but nev­er­the­less made clear their frustrations at the de­lays they be­lieve scup­pered their son’s chances of sur­vival.

Yates also main­tained that Char­lie, who is blind and deaf, had not suf­fered ir­re­versible brain dam­age as the hos­pi­tal has said and in­sisted that it was only the mus­cu­lar at­ro­phy that ren­dered the NBT ther­apy no longer worth pur­su­ing.

The court heard that af­ter new EEG and MRI scans were car­ried out that it was hoped would boost their case, a mul­ti­dis­ci­plinary meet­ing was held and ex­perts con­cluded that Char­lie had suf­fered sig­nif­i­cant mus­cu­lar de­te­ri­o­ra­tion.

Ac­cord­ing to the hos­pi­tal state­ment, its doc­tors had con­sulted with Hi­rano about pos­si­ble NBT for Char­lie last year and were seek­ing ethics ap­proval to send him to the US. But he suf­fered seizures be­fore Christ­mas that re­sulted in ir­re­versible brain dam­age. Char­lie’s par­ents dis­agreed with the hos­pi­tal’s as­sess­ment and be­lieved he could have been treated in the months that fol­lowed.

Emo­tions high … Char­lie’s par­ents, Chris Gard and Con­nie Yates

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