By Dave Andrusko
Charlie Gard has died.
“’Our beautiful little boy has gone, we are so proud of you Charlie,” said his mom, Connie Yates, who with Chris Gard fought an unresponsive judiciary and determined hospital which steadfastly refused their plea to permit them to take their own son to the United States for experimental therapy.
Details were sparse. We know Charlie was taken to an undisclosed hospice, presumably in London. In his ruling Justice Nicholas Francis made it clear Thursday that Charlie’s ventilator would be quickly disconnected and that Charlie would “inevitably” die soon.
Earlier this week, the couple 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.’
“Charlie’s Army” consisted of many more than those who contributed nearly $2 million online to defray expenses. The support voiced by Pope Francis and President Trump helped galvanize world-wide concern about a case which, at its most fundamental, turned on the question who decides what is in a child’s “best interests,” a hospital, a judge, or a child’s parents?
The position of Great Ormond Street Hospital (GOSH), which Justice Francis accepted uncritically, was
“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.”
Charlie was, in their view, better off dead. To fight for one last chance, to allow Dr. Michio Hirano to try the nucleoside therapy which he believed could help their son, was a fool’s errand, dangerous, and disrespectful of Charlie’s dignity. In this paternalistic view, voiced perfectly by bioethicist Arthur Caplan, “Love can blind doing what is best for a dying baby.”
But so, too, can institutional hubris. GOSH and Justice Francis came to the conclusion that nothing could be done for Charlie and moved heaven and earth to make sure that nothing was done for Charlie.
Along the way 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.
One other thought. In his op-ed for the New York Daily News, Dr. Caplan began 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 staff would be fortunate indeed to have 1/10th the courage, persistence, and bravery of Connie Yates and Chris Gard