LITTLE CHARLIE OPENED MY EYES

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

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.