The Universal Story of Charlie Gard

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Charlie Gard was born on the 4th of August 2016. He seemed like a perfectly healthy little baby boy, but within a short month, his life, as well as that of his parents Connie and Chris, would be far removed from that of the perfect little family they envisioned themselves to be.

Charlie would go on to be diagnosed with an exceptionally rare genetic condition called encephalomyopathy mitochondrial DNA depletion syndrome (MDDS), a condition that causes progressive muscle weakness and brain damage. As the illness progressed, Charlie was unable to open his eyes, move his limbs, and ultimately, he couldn’t breathe. The ventilator was the only machine keeping him alive.

His parents sought a lifeline, and found one in an experimental treatment named nucleoside bypass therapy (NBT). However, the doctors at Great Ormond Street Hospital, the medical facility in charge of caring for Charlie, decided that he was too far gone for the treatment to have any effect. They decided that the boy’s life support should be removed, and that Charlie should be allowed to die with dignity.

The parents, naturally, refused. They wanted to exhaust every possibility, and the NBT treatment was a lifeline. A lifeline which reached the hearts of many, as a gofundme page secured donations of more than £1.3m (a staggering R22 230 000)

Upon reaching a stalemate, the hospital applied to the High Court, seeking that the court decides the little boy’s fate. The court ruled for the hospital. Again, the parents fought, like parents do.

They exhausted every legal avenue, which also included the Supreme Court, but to no avail. The European Court decided not to intervene in the case, leaving the original ruling as is.

The nucleoside bypass therapy was to be administered by a Professor Michio Hirano from Columbia University Medical Centre. The treatment has never been administered to a human with Charlie’s condition, and preferably, the treatment should have a trial, using mice, but as there was no time.

When Professor Hirano eventually flew to the UK, Charlie’s condition had worsened even further, an MRI scan proving that Charlie had no bones in parts of his body. Chances of improvement were non-existent, whereas it was very slim before.

Chris and Connie decided to abandon all legal proceedings. It was futile. Months spent on legal battles had all been for nothing. Baby Charlie was dying.

On 27 July, a judge ruled that Baby Charlie will be moved to a hospice, since the care that he needed could not be administered at home. His final hours will be spent at a hospice.

A day later Baby Charlie drew his last breath, a week before his first birthday.

Who was right? The courts, the parents, science?

It was none of the above.

The story of Charlie Gard was about humanity, and ultimately that is what the courts and science agreed upon. Chris and Connie as well, even though their depiction of humanity was different. Humanity for them was two parents fighting to prolong the life of their 11-month old boy. It doesn’t take a parent to understand that, it’s pure instinct. That’s what parents do. That was their version of humanity – fighting and exhausting every avenue to save their child.

Humanity for the courts and science was letting Charlie die, die with dignity, and ending his suffering as soon as possible. According their depiction of humanity, it was in baby Charlie’s best interest to die. To them, it wasn’t a life worth living.

What is a life worth living?

How does one determine when a life is worth living? It’s a profound question that will be as divisive as a question over the death penalty. Is there a criteria? A checklist? Who gets to decide? Is it about communication, an ability to move, an ability to connect, or just existing? There’s more than reason to believe that Charlie won’t have been able to sustain a sufficient life. Was the prospect of improvement worth putting a baby through months of experimental treatment that could all more than likely have amounted to nothing but further suffering?

In the end, the story of Charlie Gard wasn’t about science, or law. It was about humanity. Pure and simple.

Author: Reinhardt Botha

Writer, producer and occasional asshat.

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