If you are not familiar with the Charlie Gard case, I encourage you to look it up, but be prepared for a difficult read. In a nutshell, Charlie had a rare genetic disorder which causes brain and muscle damage and almost always ends in death in infancy. Charlie’s parents wanted to try an experimental treatment which had a small chance of saving his life, but his doctors disagreed, so they went to the UK government and got a court order to terminate life support against the parents’ wishes. After months of fighting, exhausting the window in which the experimental treatment could potentially be effective, Charlie’s parents gave up, and Charlie was killed. I’m not going to go into any more detail; I find it too painful, but I’ll send you to my husband’s raw, emotional response to this tragedy.
Charlie Gard died when my baby boy was 6 days old. I read updates on the final days of his parents’ fight as I was recovering from labor and birth, nursing (painfully!) every two hours, and barely sleeping. I was full of postpartum hormones, love for my new baby, and grief for Charlie’s parents. I should not have been surprised, knowing what I do, that the state–that institution supposedly necessary for civilized society–could sentence a helpless baby to death against his parents’ wishes and despite the fact that the treatment offered would not deplete its coffers by one penny, but it was a hard reality to swallow, made all the more poignant by the surge of motherly instinct to never, ever, let such a fate befall my son.
This tragedy was made possible by well-meaning but misguided people who believe that other human beings are not capable of running their own lives; who believe that evil can be justified when it is for the “greater good.” I do not want my son to be one of those people. I do not want him to grow up in a world full of those people. I want him to live in a world where human beings interact with each other only in voluntary ways, and where no one respects those who claim that coercion or violence are ever okay. I want him to live in a world where everyone recoils in disgust at the idea that a small group of powerful people could ever override a parent’s decision to seek medical treatment for a sick child.
I don’t expect to see that world in my lifetime; I don’t expect that my son will either. I certainly can’t change the world on my own, but in the words of Albert Jay Nock, I can present the world with one improved unit, and I intend to raise my son to do the same.
The Free Baby Project 