Some Thoughts About Little Charlie Gard

July 8, 2017

By now almost everyone who is online or on social media will have heard about little Charlie Gard. He is a little one who has a very rare condition and has been diagnosed as terminal. He is in a Hospital in the UK and his parents have been trying to bring him to the United States for an experimental treatment that may or may not prolong his life, and may or may not cause him additional suffering in the process. 

 

There are a lot of politics surrounding this story and I do not want to venture there. I am not privy to all the information that has been assessed and considered by the hospitals, the courts, and the magistrates who, if given the benefit of the doubt, are charged with advocating for Charlie. Nor do I want to judge his parents. They are facing what no parent ever wants to face and they now have to do so in the spotlight of what has become an international story. 

 

But I do want to say something. 

I actually want to say a few somethings. 

 

First, I want to say that Charlie is a person, not a Hashtag. He is someone's son, not a political prop. He is a human being who has rights and dignity, not a social justice issue. He is a suffering baby, not a fundraising opportunity. He needs prayers, not shares. His parents are scared, grieving and grasping - what parent wouldn't be? - leave them alone. Sitting at your computer and reading a bunch of articles about the story surrounding Charlie does not make any of us experts on these matters - particularly end of life issues. Which brings me to my second "something." The story of little Charlie has stirred a debate on end of life matters, a debate that needs to continue. The bigger picture here is that as a world, we have slowly begun to accept euthanasia for cases that we have deemed "appropriate.' I often say in my talks that as a culture we like to believe that 'Death happens to old people, birth happens when you want it to, and circumstances determine the worth of a life." A little baby with a dim diagnosis whose parents want him to live has turned this cultural belief on its head. 

 

 I also want to say that we cannot forget our Faith. Our Faith does not compel us to prolong life when

 natural death is imminent; especially if prolonging that life would cause additional suffering and pain. Our Faith tells us that food and water are never "extra-ordinary means" of care and that they cannot be withheld UNLESS they will absolutely cause more harm to the patient who is approaching death. Withholding food and water/hydration is never ever licit when it is done to speed the death or cause the death of a person. These are hard things to talk about. They are hard because we live in a culture that at once does not value life, but fears death. There IS a right that all have to die with dignity - not like a science experiment. But dying with dignity cannot, must not, mean euthanasia. It should mean dying a natural death, when God decides it is time. It is hard for us to talk about because as a culture we have decided that when faced with approaching death we must avoid it, fend it off, elude it for as long as possible - no matter the cost! Those who would be left behind don't want to say goodbye, don't want to 'lose' their loved one and so intervention after intervention is tried. It is exhausting. It is emotionally tumultuous. And the very real Truth is, we cannot escape death. Our Faith tells us that we should not fear death! Death is not an end - it is the beginning of Eternal Life, and we have the hope of seeing our Loved One again in Heaven. 

 

So where does this leave us with the case of little Charlie Gard? Honestly, it leaves me thinking of the parents who face similar struggles and circumstances every day, but who do so quietly, privately, and without a worldwide public outcry to both comfort them and encourage the powers that be to act justly. There are other babies like Charlie Gard. There are other parents who desperately want to find a cure, a trick, a loophole or a miracle for their babies. I know. I walk with them as they prepare to say goodbye. I know because I have sat with them as they made out a living will for their child. Signed a DNR. Picked out a casket. I know because for my last 3 pregnancies I was told that my babies would not live. And they did not. I know because as a bereavement doula I watch brave, distraught, desperate, beautiful parents do the unthinkable - say goodbye to their baby, confront the reality of having a baby with a diagnosis that leaves little room for hope, grasp for ANYTHING that might save their baby's life, and accept the reality that they face. 

 

I want little Charlie Gard to live - if that is the Will of God. I hope that in the midst of all the media, all the hype and hyperbole, all the opinions and spins, that someone is asking God what HE wants in all this. Not just assuming what God wants, but actually seeking it. Because if there is one thing I have learned by experiencing my own losses and by walking with families through their hellos and goodbyes, it is that God's ways are NOT our ways, that He can and WILL work all things for good, but that sometimes we have to fully surrender to a suffering we didn't ask for in order to see the good. I hope that someone explains to the family of Charlie that an experimental treatment is not a guarantee, and that participating in an experimental trial means becoming a human guinea pig. For a condition as rare as Charlie's I hope that his parents are not given false hope, nor are they given an exaggerated prognosis. I hope that Truth is spoken to them - the fullness of the Truth that acknowledges Charlie's dignity, their rights as his parents, and his rights as a child of God. The Truth that says Heaven is our only real and true Hope and the Truth that says they are carrying a heavy burden and need support for themselves. 

 

I hope that families who are facing similar circumstances without the attention of the world are not left feeling bitter or forgotten in their own grief and uncertainty. I hope that they are not discouraged in advocating for their babies or in accepting a hard reality. I hope that as a world, as a society, we can begin to acknowledge the dignity of each and every life and just what respecting that dignity looks like. Perhaps most of all I hope that the prayers continue. Prayers for Charlie, but also prayers for the families who face unimaginable decisions. Who have to choose to honor the dignity of their children despite a hostile and often cruel world. I hope the prayers for a world that sees the worth of every life - however brief - born and unborn - not only continue but increase. 

 

Perhaps, if nothing else, little Charlie has reminded a calloused world that little lives DO matter. I hope that the world has learned its lesson. 

 

 

 

 

 

 

 

 

 

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