Charlie Gard: The Conscience of a Nation

He lies in a hospital room, his little eyes mostly closed. Although he is nearly a year old, he seems so small. Like millions of others, I only know Charlie because his picture and story have been in the news recently.

The first thing that catches my eye in his pictures isn’t the tubes attached to the ventilator keeping him alive.

I’m used to ventilators. My son Kevin has been on one since a fall in 1997 paralyzed him from the neck down. He has since weaned off the ventilator during the days, and only goes back on to sleep at night. For our family, the ventilator is well-named: life support. We are grateful for life support because it has given Kevin a chance to live.

The first thing I notice about Charlie is his beautiful face. His long eyelashes brush his cheeks. His wisp of hair is carefully combed. Stuffed animals have been tucked around him. He is obviously well-loved.

Charlie Gard was born to Chris Gard and Connie Yates of London, England, on August 4, 2016. He began to decline shortly after birth, and eight weeks later his parents took him to the hospital. It was discovered that their son suffers from a rare and terminal disease called mitochondrial depletion syndrome. He is one of only sixteen known cases of the disease worldwide. It has left him with brain damage and progressive weakness. He now requires life support.

Through aggressive research, Charlie’s parents have discovered an experimental drug that has not yet been used to fight MDS, but has helped some children with a related syndrome called TK2. This treatment is not available in the United Kingdom but is available in the United States. A fundraising effort has raised more than a million dollars for his treatments, care, and travel.

But there’s a hitch in their hope.

The Great Ormond Street Hospital, where Charlie lies, wants control over when and how he should die. The doctors there have decided to turn off Charlie’s ventilator. They have denied the family’s right to either transfer him to a hospital in the United States willing to treat him or to take him home to die.

In June of this year, the case was appealed to the authority known as, ironically, The European Court of Human Rights. The high court ruled against Charlie’s parents and in favor of the hospital’s case to remove Charlie from life support and prevent his parents from seeking experimental treatment for their son outside the United Kingdom.

His parents have fought hard to help Charlie keep fighting for life.

“If he’s still fighting, we’re still fighting,” says his father, Chris Gard.

These words ignite my heart, because Charlie Gard could have been my son. Kevin did not have the rare disease with which Charlie was born. But we have faced some of the same crucial life issues that surround this little boy since Kevin’s fall in July of 1997, during a teen mission’s trip to Canada.

When Kevin broke his neck in Lethbridge, Alberta, he was airlifted to a larger hospital in Calgary that was better equipped to treat spinal cord injuries. When we learned that he had been injured, we made the twelve-hour-drive through the night from Idaho to Calgary to join him there.

Upon our arrival, we learned the awful news that Kevin was paralyzed from the neck down and on life support. The doctors at the initial consultations gave us little hope for his survival and virtually no hope for his recovery. One doctor was adamant that Kevin could not live. When I realized he was talking about euthanizing Kevin, I rebelled with all my strength.

No one had asked our son if he wanted to live. We would not make him die.

Through a series of events I can only describe as a miracle, Kevin not only came home to live after seven weeks in hospitals and rehab, he gained back more than the doctors could have guessed. He has lived at home with his family for twenty years and accomplished much in that time. We are thankful for every day we have had with him.

Through Kevin’s injury and recovery, we have learned several important lessons:

  • Doctors can be wrong.

Had we listened to the medical advice we were given, Kevin would be dead. The doctor who gave us no hope and tried to force his viewpoint on us was wrong. Kevin did improve and has lived a useful life.

  • It is not up to others to decide which lives should be saved.

We’ve had the joy of seeing God intervene in Kevin’s case and restore much to him. But we would have fought just as hard for him had he never regained any feeling or function.  Once society begins to set a standard for humans to fulfill to be allowed to live, we are no better than Nazis. Because organs and medical treatment are at a premium, life has become a commodity to be doled to the most deserving.

When medical personnel make decisions based on the profit margin and a person’s perceived worth to society, a nation has lost its soul.

  • The term “death with dignity” is subjective.

Who gets to decide what constitutes dying with dignity? As a matter of fact, what constitutes living with dignity? When my mother was disabled by a series of strokes, there came a time that she developed pneumonia. The doctor decided not to treat her because, in his words, “Her life is useless.” He was going to let her die crying in a bed because he had made a judgment call about her worth. How dignified was that?

We insisted that he treat her. She recovered from the pneumonia and died some time later, peacefully, at God’s timing and with her family present. Her death, when it happened without duress, was more dignified than being forced to die at the doctor’s convenience.

  •  Parents should have the right to fight for their children.

In most cases, no one is going to care more for a child than his parents. It is their God-given duty to protect their child. A truly caring health care professional considers the well-being of the entire family. What could it hurt to allow them to love their little boy for as long as possible, and let God take him home?

  • If we don’t fight for the life of others, we will all become Charlie Gard.

Once life becomes worthless, once we have allocated to others the power to give and take the life of another human being, we are all at risk. Who knows when the standard will change again, and your life no longer rises to the new level of worthiness?

Today there are protests in the streets over the G-20 summit. In ten years no one will remember the G-20 summit. But who will fight for the Charlie Gards of the world?

Who will fight for the soul of the nations?

 

UPDATE: In the face of mounting international pressure, the Great Ormond Street Hospital has postponed removing Charlie’s life support for now. The hospital and parents will return to the European court to seek permission allowing Charlie and his parents to travel to the United States for his treatment.

The Vatican hospital, Bambino Jesus pediatric hospital in Rome, and the New York Presbyterian Hospital and Columbia University Irving Medical Center have offered to accept Charlie for treatment. New York Presbyterian Hospital has also offered to ship the experimental drug to the Great Ormond Street Hospital and provide advice on its administration if needed.

Both President Trump and Pope Francis have weighed in on the matter in Charlie’s favor.

 

 

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About PamThorson

Pam is a licensed practical nurse, author, and caregiver. Her first book, Song in the Night, recounts her son's fight for life after a spinal cord injury. Her second book, Out from the Shadows: 31 Devotions for the Weary Caregiver, offers hope and encouragement to those who care for others.

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