Charlie Gard, an epilogue

I waited a couple of weeks to gather my thoughts before I wrote this post. 

Charlie Gard Epilogue

When Charlie Gard passed away, I felt numb relief. 

Living with uncertainty, constantly balancing on the precipice of life and death, is exhausting. Charlie’s parents fought so hard for him — living off the fumes of hope.

It sickens me how everyone in this story has been demonized. The plight of a little boy has been politicized to the point where your own opinion may have been clouded by the smog of political hate.

You can disagree with the parent’s point of view, but to accuse them of being child abusers, or being single-handedly responsible for Great Ormond Street Hospital (GOSH) losing donations, or for threats being made against hospital staff, is wrong.

Similarly, accusing the hospital staff of trying to kill Charlie is ludicrous. GOSH genuinely believed in their opinion and assessment of what would be in Charlie’s best interests.

But as too many of us have experienced, medical professionals are not infallible. Doctors can be wrong.

Doctors have hundreds of patients, parents only have one.

There is no stronger advocate for a sick child than his/her parents. A parent’s heart never wants their child to suffer.

At the heart of this battle was a little boy and his family, diligently following the rules of the system laid out for them. They did nothing wrong, and everything right. For the first time in human history, the layperson has access to knowledge, the mysteries of medicine no longer confined only to the select few. The understanding of it is of course beyond most of us, but the ideas, the research, the differing opinions, are open and accessible.

As a lawyer, I have been trained to understand that there is rarely a right or wrong – you can always find a learned, legitimate expert to validate your point of view, to argue your case.

Good doctors encourage parents to research, reach out to experts, and tell them what you learn.  Other doctors get their backs up, and tell you that it is inappropriate and to not do it again (yes, this actually happened to me and Anakha).

When the world is full of options and opportunities, and in the absence of abuse, why is the arbiter the state and the courts?  It is an extremely expensive, dehumanizing, demoralizing, unethical David and Goliath situation. This is not the right process to put an already suffering family through.

It is a question of ethics — a value judgment — and whose values should have primacy?

As the parent of a severely disabled, terminally ill child, I get to experience the value and worth of my daughter’s life.  Another person may believe the life of a child who is quadriplegic or on a ventilator is valueless.  They are entitled to their opinion, and can make life and death decisions based on their point of view.

Ultimately the final say did belong to Charlie’s parents. They got their second opinion, and accepted that it was too late for Charlie, and they made the choice to let him go.

Their choice.

It should have always been their choice.

Thank you Connie and Chris, for bringing the scourge that is mitochondrial disease to the attention of the world.

We will always remember Charlie.

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