Lit­tle Char­lie

Northwest Arkansas Democrat-Gazette - - EDITORIAL PAGE - Charles Krautham­mer Charles Krautham­mer, who has won the Pulitzer Prize for com­men­tary, writes for the Wash­ing­ton Post. let­ters@nwadg.com

One can­not imag­ine a more wrench­ing moral dilemma than the case of lit­tle Char­lie Gard. He is a beau­ti­ful 11-mon­thold boy with an in­cur­able ge­netic dis­ease. It de­pletes his cells’ en­ergy-pro­duc­ing struc­tures (the mi­to­chon­dria), thereby pro­gres­sively rav­aging his or­gans. He can­not hear, he can­not see, he can barely open his eyes. He can­not swal­low, he can­not move, he can­not breathe on his own. He suf­fers from se­vere epilepsy and his brain is se­ri­ously dam­aged. Doc­tors aren’t even sure whether he can feel pain.

For months he’s been at the Great Or­mond Street Hos­pi­tal in Lon­don. His doc­tors have rec­om­mended re­mov­ing him from life sup­port.

His par­ents are deeply op­posed.

They have re­peat­edly pe­ti­tioned the courts to al­low them to take Char­lie for ex­per­i­men­tal treat­ment in the United States.

The courts have de­nied the par­ents’ pe­ti­tion. They con­cluded that the pro­posed treat­ment has no chance of sav­ing the child and would do noth­ing but in­flict upon him fur­ther suf­fer­ing. They did, how­ever, al­low the Amer­i­can spe­cial­ist to come to Lon­don to ex­am­ine Char­lie. He is giv­ing his find­ings to the court. A fi­nal rul­ing is ex­pected this week.

The Tele­graph of Lon­don re­ports that Char­lie’s doc­tors re­main un­con­vinced by the Amer­i­can re­searcher. In­deed, the weight of the ev­i­dence ap­pears to sup­port the doc­tors and the courts. Char­lie’s ge­netic vari­ant is dif­fer­ent and far more dev­as­tat­ing than the ones in which nu­cle­o­side by­pass ther­apy has shown some im­prove­ment. There aren’t even an­i­mal mod­els for treat­ing Char­lie’s con­di­tion. It’s ex­tremely un­likely that treat­ment can even reach Char­lie’s brain cells, let alone re­verse the ex­ist­ing dam­age.

What to do? There is only one real ques­tion. What’s best for Char­lie? But be­cause he can’t speak for him­self, we re­sort to a sec­ond ques­tion: Who is to speak for him?

The most heartrend­ing sit­u­a­tion oc­curs when these two ques­tions yield op­pos­ing an­swers. Char­lie’s is such a case.

Let me ex­plain.

In my view, two truths must guide any de­ci­sion: 1. The par­ents must be sovereign, but 2. the par­ents are some­times wrong.

I be­lieve that in this case the par­ents are wrong, and the doc­tors and judges are right. Char­lie’s suf­fer­ing is lit­er­ally unimag­in­able and we are sim­ply pro­long­ing it. This is a life of no light, no sound, no mo­tion, only mo­ments of phys­i­cal suf­fer­ing (seizures? in­tu­ba­tion?) to punc­tu­ate the dark­ness. His doc­tors un­der­stand­ably be­lieve that al­low­ing a nat­u­ral death is the most mer­ci­ful thing they can do for Char­lie.

As for mir­a­cle cures, I share the court’s skep­ti­cism. They al­ways arise in such cases, and in­vari­ably prove to be cruel de­cep­tions.

And yet. De­spite all these con­sid­er­a­tions, I would nev­er­the­less let the par­ents take their boy where they wish.

The sovereignty of loved ones must be the over­rid­ing prin­ci­ple that guides all such de­ci­sions. We have no other way. The ir­re­duc­ible truth is that these co­nun­drums have no de­fin­i­tive an­swer. We thus nec­es­sar­ily fall back on fam­ily, or to put it more sen­ti­men­tally, on love.

What is best for the child? The best guide is a lov­ing par­ent. A par­ent’s mo­tive is the most pure.

This rule is not in­vari­able. Which is why the state seizes con­trol when par­ents are demon­stra­bly in­ju­ri­ous, even if un­in­ten­tion­ally so, as in the case of those who, for some re­li­gious im­per­a­tive, would deny their child treat­ment for a cur­able dis­ease.

But there’s a rea­son why, de­spite these ex­cep­tions, all so­ci­eties grant par­ents sovereignty over their chil­dren un­til they reach ma­tu­rity. Par­ents are sim­ply more likely than any­one else to act in the best in­ter­est of the child.

Not al­ways. Loved ones don’t al­ways act for the purest of mo­tives. Heirs, for ex­am­ple, may not the best guide as to when to pull the plug on an el­derly rel­a­tive with a mod­est for­tune.

But then again, states can have ul­te­rior mo­tives too. In coun­tries where tax­pay­ers bear the bur­den of ex­pen­sive treat­ments, the state has an in­her­ent in­cen­tive (of which Bri­tain’s Na­tional Health Ser­vice has pro­duced no­to­ri­ous cases) to deny treat­ment for rea­sons of econ­omy rather than mercy.

None­the­less, as a gen­eral rule, we trust in the im­par­tial­ity of the courts—and the lov­ing im­per­a­tive of the par­ent.

And if they clash? What then? If it were me, I would de­tach the tubes and cra­dle the child un­til death. But it’s not me. It’s not the NHS. And it’s not the Eu­ro­pean Court of Hu­man Rights.

It’s a fa­ther and a mother and their des­per­ate love for a child. They must pre­vail. Let them go.

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