LIT­TLE CHAR­LIE OPENED MY EYES

The short life of Char­lie Gard has re­minded me of a few facts of life

New Straits Times - - Opinion - ken­nyg@nst.com.my The writer is a NST sub-editor

ON July 28, Charles Matthew Wil­liam Gard was taken off life sup­port, and his soul slipped away with dig­nity, after suc­cumb­ing to a rare in­her­ited dis­ease called mi­to­chon­drial DNA de­ple­tion syn­drome.

Never has a per­son, for the first and only 358 days of his life, touched so many hearts.

The way the case was han­dled has stirred up ques­tions about med­i­cal ethics. Al­though our coun­try has not had a com­pelling case like lit­tle Char­lie’s, how will we han­dle it if one such baby is born among us?

My knowl­edge in the sub­ject is not deep, so I leave it to the learned ex­perts to ex­plore the is­sue. On my part, the crit­i­cal mo­ments of Char­lie’s case last week have made me pause to pon­der on life.

Tragedy sucks

Life can hit you hard and it’s of­ten be­low the belt. You must ex­pect the worst be­cause it will leave you reel­ing and bit­ter, with lit­tle sup­port to count on.

When the touch­ing video of a seem­ingly nor­mal Char­lie bub­bling with joy while hold­ing his 2week-old birth­day card sur­faced on the In­ter­net, his dot­ing par­ents, Chris Gard and Con­nie Yates, must have been over the moon to have such a beau­ti­ful boy.

That was un­til the dis­ease be­gan to man­i­fest it­self two months later. By the time Char­lie died, his frail body was hooked up on tubes. He had be­come deaf and blind due to brain dam­age, and he couldn’t drink milk and cry.

No­body even knew if he was feel­ing pain. Ev­ery­thing was “dic­tated” to his best in­ter­est by peo­ple who did not owe him any love. Which brings me to the next point...

You can’t con­trol ev­ery­thing

What do you do if you are sick? Ob­vi­ously, you go see a doc­tor to get bet­ter.

But what if you don’t get bet­ter? Sim­ple, just go see an­other doc­tor un­til you do get well.

How­ever, the fight to save Char­lie is not so straight­for­ward.

It was filled with an­guish be­cause ev­ery ef­fort the par­ents took to save their son had been coun­tered by the hos­pi­tal treat­ing the baby. And the le­gal sys­tem sided with the hos­pi­tal.

Even fate played a cruel trick. The wish to bring Char­lie home to die on his first birth­day could not be ful­filled be­cause the ven­ti­la­tor was too big to fit through the house door, and the par­ents could not agree with the hos­pi­tal on pal­lia­tive care.

In the end, ac­cord­ing to a Daily Mail opinion I read, the case is not about a bat­tle be­tween the par­ents, the courts and med­i­cal ex­perts on who has the fi­nal say over what hap­pens to their chil­dren.

It is, in the writer’s opinion, about who plays “God” in mat­ters of life and death, now that so­ci­ety has rel­e­gated re­li­gion to the side­lines.

This whole episode seems so un­fair, and it is even more painful for the par­ents to learn that they have lost all con­trol in de­ter­min­ing the fate of their son.

They were forced to trust the med­i­cal and le­gal ex­perts, who seemed to know best, even though they did not agree with the way their son was treated.

That may have a point as treat­ment should not be sub­jected to emo­tions that may be detri­men­tal to the dy­ing baby.

But med­i­cal knowl­edge is not in­fal­li­ble, and there are many more things we do not know, which could be bet­ter or worse in treat­ing the baby.

We are only hu­man, and hu­man­ity comes with hope and emo­tions. The sad re­sult is just a heart­bro­ken cou­ple who got trapped in a void of hope­less­ness.

So, what hap­pens if it’s me or you who’s in­ca­pac­i­tated?

How will we ac­cept the fact that we no longer con­trol our lives, which only each of us has the God-given au­thor­ity to live?

Carpe diem, say the mo­ti­vated folk. Your life is yours, take charge and live it to the fullest.

True to ev­ery word, but this is an un­der­state­ment in Char­lie and his par­ents’ sit­u­a­tion.

Silver lin­ing in dark clouds

When Chris and Con­nie sought to take Char­lie over­seas for an ex­per­i­men­tal treat­ment in March, they were ham­pered by the cost of £1.2 mil­lion (RM6.7 mil­lion).

But by the fol­low­ing month, the cou­ple had hit their tar­get through kind-hearted donors.

If you are one of those who chipped in, how do you feel now that you know your con­tri­bu­tion had failed to save the baby?

In fact, would you have do­nated if you knew the Bri­tish and Euro­pean courts would not have al­lowed Char­lie to un­dergo the treat­ment?

No, I don’t think any­body will think of those ques­tions un­less his name is Ebenezer Scrooge.

I no­tice that if the case is gen­uine, there will be many big­hearted peo­ple who will step up to do their part.

Time to say good­bye

But how can we say good­bye just like that, es­pe­cially to a baby who has so much to live for?

Worse still, how do you say good­bye when he doesn’t even know that it’s time for him to go?

Char­lie’s par­ents have shown great courage in fight­ing for their son.

The case has demon­strated the sheer tenac­ity of the hu­man spirit, and made peo­ple ask if there is any­thing more go­ing on be­yond what we know.

It’s a cliché to say we can’t imag­ine what the par­ents have gone through. It’s not that we can’t en­dure that suf­fer­ing, just that we don’t want to and will take all steps to avoid it.

Let­ting go is eas­ier said than done, but I sup­pose the short, sweet mem­o­ries with their son will al­ways re­main in the hearts of Chris and Con­nie.

Rest in peace, Char­lie Gard.

The case has demon­strated the sheer force of the hu­man spirit, and made peo­ple ask if there is any­thing more go­ing on be­yond what we know.

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