In the UK, there is a 10-month-old baby with a terminal disease – his life and his immanent death are sending ripples across the world. Charlie knows the inside of an ICU, the artificial lungs to breathe for him, artificial people to speak for him, and everyone has his best interests at heart, right? Then why is everyone at odds? Why has this become the social, political, moral and ethical debate on which everyone from the Pope to Trump has weighed in? Because a baby is dying?
A baby died while I wrote this sentence, and none of you fought to save her. She won’t have a name or a gravestone. She died because her mom couldn’t get an abortion legally, so she gave birth to her and threw her in a dumpster, desperate and terrified and unable to take care of another mouth when she can’t even feed her own. He died because his mother’s food stamps were cut and there was no money to get his medicine, and he couldn’t breathe, and she was alone and broke and she fell asleep and never heard his last cry. They died of poverty and disease and lack of access to healthcare. They died.
But you don’t care. This isn’t about them.
Charlie’s muscles, brain and kidneys do not get the energy they need because of the disease he has – Mitochondrial DNA Depletion Syndrome – meaning he has fewer mitochondria than the average person, and those are what convert the chemical energy from food. It’s rare, it’s terminal, and – in Charlie’s case – it’s advanced.
Charlie is dying. His parents are torn apart, as they should be — they want to do something, anything; they sought help from medicine, but medicine has limitations, which they have reached, and now, when you have come to the end of the road you know… sometimes you have to let go.
But we live in a society where it is easier to be morally outraged than it is to be sad, sad that a baby is dying, sad that your baby is dying. So scream and rage against a system that rightly says, I know you love him and it is time to let him stop suffering. Your miracle can still come, and if it does, we will all stand with you, amazed, but don’t make him suffer more, as if that increases the likelihood that God will reach from the sky and put him back, safe and healthy in your arms.
Maybe you don’t understand the miracle you’ve asked for. The treatment for which Charlie’s parents wish to bring him to the US is, quote, “unlikely to work,” according to the doctor who might treat him. It has not been used on his particular disease variation, not even in mice. His parents, hoping for a cure, brought him to the best; the best couldn’t cure him. His parents cannot hear that. They are still fighting. My heart bleeds for them, but now they must – someone must – look for what is best for Charlie. Not what’s best for his parents, lost in their sea of grief, just for Charlie.
Transporting Charlie for treatment will not only be a difficult and risky procedure, but a further prolonging of Charlie’s suffering. The European Court of Human Rights ruled about Charlie’s life support being terminated. Understand that ruling: further prolonging his life would be considered HARM.
We scream death panel, we scream that a parent knows what is best for their child. We know that we are hypocrites even as we scream these phrases. How many desperate parents have done wrong by their children, not out of malice, but out of love? Medicine cannot prolong life forever, it cannot cure all, we all still die. Those doctors are likely as heartbroken as any in having to make such a decision in this case, yet you emphatically curse them as if they called for him to be slowly tortured. The truth is, it’s those that call for him to stay on this side that ask for something closer to that.
Who are you to speak? Who am I? I’m not there; I’m not his mother or father or the team of healthcare workers who have given up most of their lives for the last few months to care for this little one. You know so little, yet you presume so much. You will splatter the blood of a tiny child across the world with your wild accusations and groundless arguments. Trump offers help and the Pope offers hope and we all grab a small part of a tiny child… the world desperately needs a King Solomon right now who would sooner cut the poor babe in half, than prolong this media-fueled torture.
Amanda L. Carr
July 11, 2017