By Dave Andrusko
Editor’s note. This appears in the August digital edition of National Right to Life News. Please read the entire 42-page issue and pass it along using your social media contacts.
At first glance it might seem odd that one extremely ill baby born to one working class couple from Bedford in West London would have the world-wide impact of little Charlie Gard. But stories of extraordinary parental devotion running headfirst into the most powerful medical and legal institutions in Great Britain only needed exposure to arouse our deepest sympathies and to enlarge “Charlie’s Army.”
And that’s what the support of President Trump and Pope Francis accomplished. Suddenly everyone knew that Connie Yates and Chris Gard were battling an unresponsive judiciary in the form of Justice Nicholas Francis and a famous children’s hospital– Great Ormond Street Hospital (GOSH)–which steadfastly refused their plea to permit them to take their own son to the United States for experimental therapy.
Born August 4, 2016, Charlie seemed perfectly healthy. Taken early there is a “touching video,” as the Daily Mail put it, where “Charlie Gard looks up at the camera in peak health.” Instead they were to learn only a month later that Charlie had a devastating illness–mitochondrial DNA depletion syndrome.
As NRL News Today readers are sadly aware, Charlie died July 28 when his ventilator was disconnected. But perhaps like me, you did not know until late last week that (according to a story in the Telegraph) “Charlie Gard battled for 12 minutes after his life support was removed before dying, his parents have revealed.”
“Chris Gard and Connie Yates have said their baby lived for twice the predicted time after his ventilator was disconnected and that they subsequently took him home in a specially chilled cot,” reported Henry Bodkin. “The couple described their devastation at being denied the chance of a few days’ ‘tranquillity’ at home with their son before he died, but said it ‘felt perfectly natural’ to take Charlie home with them after his death.”
Bodkin’s story alternates between heart-warming vignettes and instances on pettiness which made Charlie’s last day more difficult for his parents.
For instance, “Once home, it was lovely to sit and watch him, lying there like any other baby, not surrounded by equipment and machinery, without anything obscuring his lovely face, to just see Charlie, at home, sleeping in his cot where he should be,” as Connie Yates told the Daily Mail.
Or that “Charlie was taken out for a walk in a pushchair in the hospice grounds and had plaster of Paris moulds taken of his feet and hands before staff removed life support. Or that “Charlie opened his eyes and looked at us one last time and closed them before he passed away,” according to his mom.
On the other hand, sadly, “The parents revealed they were not allowed in the ambulance with their son on his trip from Great Ormond Street [to the hospice],” Bodkin reported.
NRL News Today posted over 50 stories about Charlie, Connie, and Chris. I trust you read many of them. (If you are not receiving NRL News in your inbox, just take 30 seconds to sign up here.)
The story has multiple levels of meaning. Here are three of 20.
#1. Over and over, Connie and Chris made it abundantly clear if Justice Francis ever unshackled Charlie, they would go the United States to try experimental nucleoside therapy but only for a limited period of time (three months). In one of the most powerful of many statements Connie made, she told the media
“We aren’t fighting because we cannot bear to lose him. He’s my boy. It’s what’s best for him. … I would do anything for him. He deserves his chance. …We firmly believe that he was sent to us as we are the only ones who look after him. We truly believe that these medicines will work. After three months we would want to see improvement and, if there wasn’t, we would let go. This is not the life we want for Charlie. A chance to keep fighting, he deserves that chance. We are doing this for him.”
By contrast the Great Ormond Street Hospital took the position from which it never waivered
‘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.
Chris and Connie wanted to see if Dr. Michio Hirano’s therapy could work for Charlie. GOSH insisted they knew that it was in Charlie’s “best interests” to be “allowed to die with dignity.”
#2. GOSH and Justice Francis kept intimating as if it were a fact (not a guess) that Charlie was suffering and (even if he wasn’t) he might if he were moved to the U.S. But even two of these most utilitarian bioethicists in the world– even Julian Savulescu and Peter Singer– sided with the parents.
As they wrote, it is a value judgment, not a scientific judgment “whether the pain of three months of intensive care (minimised by sedation and analgesia) is worth taking to gather more information about the prospect of improvement with experimental therapy.”
Understand, like many others who come down on the parents’ side, if Charlie were their child, they wouldn’t take him to the United States.
Which brings us to
#3. Which is that Charlie wasn’t their child! Nor was he Justice Francis’ child or GOSH’s child. He was Chris and Connie’s!
Justice Francis groused a lot about “outsiders” and critics who blamed the Britain’s National Health Service for the decision not to allow Charlie’s parents to take him to the United States. He insisted it was strictly a decision on what was best for Charlie–and that the experts knew better.
Along the way, I regret to say, Dr. Hirano was slimed with hints that there was a monetary reason behind the offer of his services. If that wasn’t bad enough, GOSH accused a man who serves as Chief of the Neuromuscular Division and Co-Director of the Columbia University Medical Center Muscular Dystrophy Association clinic and is Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases, of offering “false hope” to Connie and Chris.
That was the undertow of a couple of pieces written by bioethicist Arthur Caplan. Adding insult to injury, he began an op-ed for the New York Daily News with these ten words: “Charlie Gard’s parents have decided to throw in the towel.”
They raised almost $2 million, took their case to three courts, including the European Court of Human Rights, convinced the Columbia University Medical Center to admit Charlie as a patient, persuaded the United States Congress to begin the process of giving the family permanent resident status so they could come here for treatment, tugged on the heartstrings of the Pope and the President of the United States and countless other millions around the world.
“Threw in the towel”? Chris and Connie took on bastions of established power. They were beaten, but not defeated, by a system that gives hospitals’ enormous power in determining what course of action will be followed.
Might I add that Dr. Caplan, Justice Francis, and the GOSH administrators would be fortunate indeed to have 1/10th the courage, persistence, and bravery of Connie Yates and Chris Gard.
The week before Charlie died, his parents paid tribute to their ‘absolute warrior.’
His father said
‘Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.
‘We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.