Love Wasn’t Even Allowed to Try: Charlie and Bella and All We Have to Lose
Charlie Gard’s death was infuriatingly wrong. I don’t mean his death due to his terrible illness. I mean his death which was decreed and enforced by the courts at the urging of doctors and lawyers who decided Charlie’s life had to end.
“Incompatible With Life”
I can’t help but think of Bella Santorum. Rick and Karen Santorum’s youngest daughter has Trisomy 18, a severe chromosomal disorder that often proves fatal before birth and soon after. I’ve had the pleasure of speaking personally with Karen about Bella on more than one occasion, and she said something I will never forget. It’s Karen’s motto and her mission statement: You never lose with love.
Rick and Karen have had to fight tooth and nail for Bella’s life since she was born. They encountered doctor after doctor who deemed Bella “incompatible with life” and told them to just let her die. Doctors didn’t want to treat Bella. They didn’t want to help Rick and Karen care for her. They judged Bella’s life to be unworthy of the effort, and her “quality of life” too low to justify any treatment.
They determined she was “better off” dead, and everyone around her would be better off as well. The best thing would be to “let her go” and end her “suffering.”
Unfortunately, in the case of Charlie Gard, love wasn’t even allowed to try.
They made vague value judgments, and then wanted to enforce their values on Bella, and on Rick and Karen.
Rick and Karen had other values. They valued their daughter and her life as a gift from God. They decided Bella’s life or death was God’s prerogative and no one else’s, and they determined to do everything in their power to help Bella live. They were warriors in her defense. And they prevailed. Today, little Bella is 8 years old and a very happy, smiling, doted on little girl. She’s surrounded by a family that loves her and couldn’t imagine life without her.
The Wrong Values Prevailed
Chris Gard and Connie Yates were also warriors in defense of their son. Unfortunately, this time, another set of values prevailed. This time love wasn’t even allowed to try.
There was nothing at all to lose by trying, but instead love was shut out. False mercy was cloaked in misleading talk of “dying with dignity” and “quality of life.”
Katie Gallop led Great Ormond Street Hospital’s legal team. She told the court the “experimental” treatment would not help Charlie. Therefore, “there is significant harm if what the parents want for Charlie comes into effect,” she told appeal judges. “The significant harm is a condition of existence which is offering the child no benefit.”
She added: “It is inhuman to permit that condition to continue.”
Ms. Gallop unjustly portrayed Charlie’s parents as wanting “significant harm” for their son simply because she didn’t believe an acceptable “condition of existence” could be achieved for Charlie, and any life below that arbitrary threshold was “inhuman.” She painted Chris and Connie as the enemy of mercy for Charlie, and the court as the rescuer who had to spare Charlie such a heartless fate.
In truth, there was no way for her or anyone else to know what sort of benefit Charlie might have gotten from treatment. More importantly, she cruelly argued that his parents were wrong, even derelict in their duty as parents to even want to try this new treatment.
This argument clearly ruled the day, and the court took away Chris and Connie’s right to decide what happened to their son. Somehow his parents’ love for Charlie disqualified them from any authority over his care and future.
The Bottom Line is They had the Right to Try
Lawyers and judges inserted themselves into this family’s sovereignty and ruled that Charlie must die. No other outcome would be permitted. No hope would be tolerated, no chance allowed. Only death, and death on their terms.
Charlie wasn’t being abused or mistreated. His parents were by every measure lovingly devoted to their son. They had not forfeited their parental rights through abuse, neglect or any other offense against Charlie. They simply valued his life more than the doctors and lawyers, and they were determined to fight for him.
They had the God-given right to pursue treatment for their son, period.
The hospital wrongly usurped Charlie’s parents’ rights and waged a cruel court battle that never should have happened in the first place.
No one knows with any certainty whether or how the nucleoside therapy might have helped Charlie. No one knows because no one tried. Is this not how medicine advances? By trying new treatments? His parents would not have allowed anyone to harm Charlie for the sake of “experimenting” on him. They simply wanted to give him every possible chance.
You Never Lose With Love
If they had tried, and the treatment had failed to help, they would have lost nothing, but gained something precious. The end of Charlie’s life would have been a very different experience. His parents would have no bitter regrets. There would likely have been some peace, because in love’s timing, the heart comes round to acceptance a little easier, and peace can come. Chris and Connie and Charlie all deserved to truly let Charlie go freely, out of love and in love and peace, not to have him wrenched away from them by force, after being held hostage to a death sentence.
August 4th would have been Charlie’s first birthday. Yes, he had a rare disease that began taking his health away many months ago, and the odds were against him. He also had loving parents — and friends around the world — who moved mountains to provide Charlie a chance at life.
Bella Santorum shouldn’t be alive according to every nay-saying doctor who refused to value her life. They were all obviously very wrong.
Charlie was worth the chance, no matter how small it was. Doctors are not God, and too often their values leave no room for love.