The Tragic Case of Charlie Gard, Socialized Medicine, and The Colosseum of Ego: Part 1

Image courtesy of Reuters

The late Ralph Waldo Emerson once stated that "The greatest gift is a portion of thyself." I think of this often now with the tragic case of Charlie Gard—a beautiful 11-month old child facing an incurable genetic condition. Lying on a hospital bed, surrounded by a mountain of toys and stuffed animals, forehead moist with the kisses and tears of loving parents, he is kept alive by medical equipment providing life support. Charlie's chances of living, let alone recovering, are a distant dream. However it is still a dream framed with hope, no matter how meager that hope may be. Charlie's parents, Connie Yates and Chris Gard, want nothing more in the world than a chance at that dream, at that hope. If the greatest gift is a portion of thyself, what portion is given when there are those in positions of status and authority that seem to want nothing more than for that dream to fade away. What does it say about us as a people if we have formed such callouses against the sanctity of life?

I am a man of few tears, but tremendous pain. As I look upon the tragic case of Charlie Gard, I cannot help but see beyond the anger and politics and instead to the Colosseum of Ego. I'll repeat: I am a man of few tears, but tremendous pain. I have lived the large majority of my life waiting for one form of cancer to next to be the one that would take my mother from me. Blips and beeps, cries from distant hospital beds and waiting rooms, the sickeningly sweet and nauseating smells of chemicals and antiseptics, the long waits in uncomfortable chairs and hospital food that confirm the stereotypes are all commonplace to me. The hospital was my second home, sitting either in a waiting room chair or at my mother's bedside as she battled for her life year after year after year. Some of my earliest memories are times spent with friends and family in the halls of various houses of healing and regularly giving up my bedroom to sleep on a pullout or on the floor. It was something so common, I didn't fully understand my circumstances till much later in life.

Before I was into my double-digits of life, my mother had been told by doctors to get her affairs in order. One doctor even told her that he "would not touch her with a ten foot pole." Such hubris. Such ego. Unknown to me at the time, my mother was told let go of life and "die with dignity," all the while she never ceased to show me strength and the beauty of life. There are many stories of my mother's struggles that could fill a book. I will briefly relay only one story that best illustrates my argument.

My father was an officer in the United States Navy. It was the early 90's and he had just received orders to assume command of the Naval Reserve Center of Rock Island Arsenal in Rock Island, Illinois. The reserve center was part of a metropolitan area known as the Quad Cities—two cities in Iowa and two in Illinois. The Quad Cities are split through the middle by the mighty Mississippi River, separating the two states. We moved to a small but growing town just outside the Quad Cities in Iowa. While my mother had several struggles with cancer during our years in Iowa, there was one battle that highlights the hubris that forms what I like to call the Colosseum of Ego. This is the story of how my mother had ninety percent of her liver removed. This is the story of how my mother survived.

I was a short, underweight, bullied, and troublesome preteen in junior high. My mother has recently defeated one form of cancer only to be hit with another tumor on her liver the size of a small grapefruit. The only option was to remove more of her liver than surgeons had ever done before. It happened at the prestigious University of Iowa medical center. The doctors convened their Mortality and Morbidity Board (yes, this is a real thing) and were unanimous. My mother was a lost cause, best to "get her affairs in order" and "die with dignity." They refused to waste their time and effort on such a case. Well, it was almost unanimous. One brave and brilliant surgeon of high standing hated the Colosseum of Ego and their their Mortality and Morbidity Board (it's all about stats for prestige). She refused to let my mother give up without a fight. Against massive push back and ruffling of feathers, this doctor put her foot down, pulled rank, and went ahead with the surgery. She was very clear of the dangers. She was clear that there were potentially better odds in the lottery, but also knew there was a very dim and distant hope that could be snatched from the heavens.

My mother went under the knife, having ninety percent of her liver removed. A lady in the ICU room next door has a similar, but more manageable tumor of her liver. This lady had fifty percent of her liver removed. She passed away in the ICU roughly a week after surgery. My mother spent weeks and weeks in the hospital, but survived. Her stay in the hospital was a long, grueling process, followed by just as grueling a process at home. Her surgical wound had to heal openly. Simply put, her wound was wide open, packed with medical dressings that had to be changed regularly. Without these dressings covering her wound, her liver was completely exposed. Healing took years, but she survived because one doctor refused to follow suit with the unanimous opinion of the medical community.

You would think that performing an unheard of surgery and being successful beyond all reason would merit tremendous praise and accolades from the medical community at the University of Iowa. You would be wrong. This accomplishment was met with anger and hatred for proving the consensus wrong. Saving my mother's life made the other doctors look like fools. It was not to be tolerated. Less than one week after saving my mother's life, her surgeon left the University of Iowa medical center for Boston. While my mother eventually died due to cancer, she lived for nearly twenty more years. She lived to watch me and my brother graduate high school, college, join the military, get married and more. Most of all, she got to see three grandchildren born. She held them in her arms, watched them laugh and cry, watched them crawl and walk, watched them talk and play together, and celebrated their birthdays. My mother battled over thirty different cancers in her life and there are many more stories just like this one. My mother died in 2014. She passed away peacefully with her whole family at her bedside to kiss her and say goodbye. She died on my daughter's birthday.

I have never written this story down before. I have yet to read a single page of what my father has written of my mother. It has been too hard to endure, to read, or to put on paper. I write this with a tear forming in my eye as I relive these events, and remember the week I spent waiting beside my mother, waiting for her to pass. I remember watching as my mother was taken away, only to shake off the emotions to get the house ready for my daughter's birthday party. I am deeply thankful to God for all the time I was granted with my mother, and thankful for the doctors that went against the grain to save my mother's life time and time again. I am reminded just how important hope can be, no matter how distant. I have seen miracles come through the hands of doctors. I have also seen evil in doctors  in the form of ego. I can no longer let my emotions hold me back against writing about the tragic case of Charlie Gard from my unique perspective.

Charlie Gard, less than a year old, is facing mitochondrial DNA depletion syndrome, an incurable genetic condition. He has been receiving care at Great Ormond Street Hospital in London, England. His parents simply want to take him to the U.S. where doctors are ready to perform an experimental treatment they hope will prolong Charlie's life.

Charlie suffers from severe seizures, and has what professionals in the medical field believe is irreversible brain damage. Some accounts say that Charlie cannot see or hear and needs life support to breath on his own. His prospects are dire with little hope, but that never stopped my mother nor does it seem to be stopping Charlie's parents, Connie Yates and Chris Gard. They have raised more than $1.7 million due to the kindness of strangers to bring Charlie to the U.S. for treatments.

Unfortunately, what is stopping Connie Yates and Chris Gard from trying to save their child's life is doctors: the very people that swore an oath to care for the sick. Great Ormond Street Hospital opposes Charlie's release. Hospital staff have ruled that withdrawing life support is the only ethical and humane option, and that he should be left to "die with dignity." There's that phrase again.

Great Ormond Street Hospital released the following statement:

“It has been and remains the unanimous view of all of those caring for Charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare. That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.”

This case has been fought from GOSH to the High Court, to the Supreme Court, to the European Convention on Human Rights. Multiple times, and multiple courts have all agreed, siding with their ego, to have Charlie's life support removed. Luckily, public outrage has created an atmosphere calling for further deliberation, and there have been multiple stays of the order. These deliberations have been a mockery of human dignity. They show how governments and the Colosseum of Ego truly feel about the sanctity of life. In an age of abortions on demand, should we really be so surprised?

This is a case with many twists and turns, battling over months across various courts. Connie Yates and Chris Gard have been fighting since November 2016 to have their child released from GOSH so that they can transport him to the U.S. for treatment.

Chris Guard's statement is all that should be needed to make this happen:

“He’s our son, he’s our flesh and blood. We feel it should be our right as parents to decide to give him a chance at life. Let’s get Charlie the treatment he needs. If he’s still fighting, we’re still fighting....”

Yes, they are still fighting. They are fighting a battle no one should ever have to fight. They are fighting a battle against their own government. And, unfortunately, their own government and an army of doctors are fighting against them.

The answer to this should be so simple. This family knows the chances are very slim that their child will survive this, but what good reason is there to deny a family the right to fight for their child's life? GOSH, the courts, and even European Convention on Human Rights (much irony here) all argue that Charlie " has no quality of life and no real prospect of any quality of life."I am deeply disturbed by this, as should we all. What is their definition of "quality of life?" Who gets to determine that definition?

Many argue this case is irrefutable evidence that death panels exist in England. This is correct. Many argue this is a perfect example of why socialized medicine should be feared. I, too, wholeheartedly believe this. However, there is an issue far greater at stake in my opinion. That issue is of the Colosseum of Ego.

End Part 1