What Charlie Gard taught me

No matter how you felt about the situation of Charlie Gard and his parents and about how it was handled, you will likely agree that little Charlie’s life and death have not been in vain. Many bioethics scholars and others – predominantly men, I noticed – have been writing up their feelings and opinions on the matter, analyzing what happened and drawing conclusions. This will benefit future babies like Charlie and future parents like Charlie’s.

Or at least, it should!

Like all those other people, I too want to do a write-up because it will be very enlightening for myself (maybe also for others, because I did a surprising U-turn).

In this post, I will not go into the differences between Britain and other countries. Neither will I discuss the British legal background of the case, but I do want to point out that it must be kept in mind as essentially separate from all other considerations. The law of England & Wales must be adhered to, whether we like it or not, and in many cases that should entice the legal profession to pick up the lead in their arena and endeavor to have laws changed where called for. (Legislature, that is your duty! Step up to the plate.)

I was like just about everybody else. When I first heard about Charlie Gard case, I saw it as a consumerist view of babies. Baby has a defect. Must be fixed. Period.

As a teenager, I saw my mother suffer for many years, wither away and die and it was an immense relief for me that her suffering had ended when she died.

So, no, I am not for the extension of life “at all cost” / “no matter what” because that often is very selfish on the side of everyone who is not the patient in question. Family members and friends have to ask themselves what it is that they want. Do they want to hold on to the person no matter what or do they want that person to be free of pain?

Letting go is part of life, part of growing up, part of… being.

When one door closes, another one opens, in so many ways.

So I felt angry and frustrated toward Charlie Gard’s parents, although I certainly understood their anguish.

Earlier this year, I came up with a definition of what constitutes “a life not worth living” and Charlie Gard’s vulnerable little life fit that definition. Please, stop his suffering and let him pass away, as nature itself considers him not viable and he would surely have passed away a long time ago if it hadn’t been for the care and services provided by Great Ormond Street Hospital. That’s what I thought.

Please, please, please, let him go. Let him gooooooooooooooooooooo! That is what life is about!

But I had also come up with a definition of what harm is, within this context…

Both my definitions were very logical. I found them through play, playing with words, playing with ideas, concepts. They’d surely come across as “chilly” and “cruelly objective” to the “public”.

And then I saw that they clashed.

That’s when I saw that there was no conflict.

Both parties wanted what they thought would be the best for little Charlie.

But the only party with a real interest in this – one that didn’t clash with the wishes of the medical staff at GOSH – were Charlie’s parents.

Forgive me, please, for having accused you of a consumerist view of your child at first.

If Charlie had lived, he would be part of YOUR life now – not the hospital’s – and you were willing to accept anything that would have meant, it seems.

Who am I to judge a “vegetable” not worth of living?

Who am I to judge a being able of experiencing joy – and pain – as a life not worth of living?

Isn’t it true that ALL LIVES experience joy and pain?

Isn’t it true that this is LIFE?

I wrote the above after having consumed a considerable quantity of rum. Nothing bad about that! Below are my very (sober and) logical considerations.

Feel free to share your opinion below, please.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.