Charlie Gard died July 28, 2017, a week before his first birthday.
When Charlie was two months old, his parents, Chris Gard and Connie Yates, took him to London’s Great Ormond Street Hospital (GOSH), alarmed that he wasn’t thriving. A few weeks later, Charlie was diagnosed with a rare and progressive mitochondrial DNA depletion syndrome. The condition left him brain damaged, unable to move his arms and legs, and reliant on a ventilator. An experimental treatment was considered, but after Charlie experienced seizures and further brain damage, his physicians decided to withdraw life support and focus on palliative care.
Understandably, Charlie’s parents were devastated. They desperately wanted hope, needed it. That hope arrived—from an American physician, Dr. Michio Hirano, who had developed an experimental treatment. According to Hirano, the treatment offered a 10 percent chance of improving Charlie’s condition. A 10 percent chance. Any chance, even smaller than 10 percent, is still a chance, conjuring possibilities—of life, a future for Charlie.
Gard and Yates wanted their son to be treated in the US by Hirano. GOSH physicians disagreed with this decision. Court hearings ensued. At one of these, Hirano stated, for the first time, that he has a financial stake in the medications he wanted to prescribe for Charlie.
In April, the High Court judge, Mr. Nicholas Francis, wrote that there was “unanimity among the experts” that the treatment could not repair brain damage, that the therapy has never been tested, and that it could subject Charlie to pain, even mutations. Justice Francis determined that Charlie should be allowed to die with dignity.
The case attracted global attention.
Rejecting medical issues, moralizing vultures swooped down to pick at a couple’s anguish. Right-wing US politicians and bloggers exploited Charlie, his mother and father, using the family’s tragedy to advance conservative positions with inflammatory rhetoric. I paraphrase: “This is what happens with socialized medicine.” “Parents will have no rights in in determining what’s in the best interests of their child.” Some referenced that fear-provoking Palin-ism, death panels.
Enter Mike Pence. The unctuous VP twisted the Gard’s situation, distilling it to an issue of health insurance, as he promoted a Wall Street for-profit system that might as well advertise: If you can’t afford corporate care, fuck you. Pence said to Rush Limbaugh, “The heartbreaking story of the 11-month-old Charlie Gard in England is a story of single-payer health care . . . the American people ought to reflect on the fact that for all the talk on the left about single payer, that’s where it takes us,” implying that single payer removes parents’ rights to choose what is best for their children, removes anyone’s rights to what is best for his or her healthcare.
Tweeter Trump fingered in with: “If we can help little Charlie Gard as per our friends in the U.K. and the Pope, we would be delighted to do so.”
Interjection: This is the new Donald Trump, champion of some children. The pre-oath-of-office Trump didn’t give much of a shit about children, wasn’t interested in participating even in the care of his own. That was the role of women. Here’s what Trump said to Howard Stern in 2005: “I mean, I won’t do anything to take care of them. I’ll supply funds and she’ll take care of the kids. It’s not like I’m gonna be walking the kids down Central Park.” A couple of years later, Trump told Stern about his relationship with Tiffany, saying that Tiffany visits for about an hour. Trump provided an example of his closeness to Tiffany: “Hi Tiff, I love you Tiff.” And this: “She’s a great kid.” He knew she was smart because he “glances” at her report cards. Pity the son who embarrassed Trump, who failed to meet the impossible expectations. Pow, a slap in the face. During his acceptance speech, Trump said he was proud of Don and Eric and Ivanka but not so much Tiffany, “cause she just got out of school.” Huh?
The obscenity intensified with Jaime Herrera Beutler’s amendment to offer US residency to Charlie Gard and his parents so that they could travel to the US to receive Hirano’s experimental treatment. Yes, that’s right. Charlie and his parents were granted US residency. Meanwhile, Trump is decimating foreign aid. Meanwhile, immigrants are seeking asylum in sanctuary cities after receiving deportation notices, yet the panderers move to placate their howling religious-nutter constituents. Meanwhile, Trump and Co. seek to remove health insurance from millions of Americans. (Yes, I know the Affordable Care Act, crafted by and for Big Insurance, is a disaster, but that’s not the point here.)
This is: Whatever side you align with, Charlie Gard’s situation was made even more difficult by charlatans attempting to promote their own interests.
And: Rights. Rights of parents and children and both of these areas in connection with the hypocrisy of those who are selective in deciding which parents are allowed to make decisions in the best interests of their child, selective in deciding which children are valued enough to have decisions made in their interests.
Flint, Michigan: In April of 2014, water supply to the city was switched to save money. In January of 2016, Obama declared a federal state of emergency. Thousands of children were exposed to lead poisoning. How could the parents in Flint act in the best interests of their children when local officials denied the existence of a problem?
Anywhere, USA: Poverty, homelessness, substandard education, lack of healthcare. How can parents act in the best interests of their children in any of the above circumstances?
Anywhere, USA: Parents of black children must have “The Talk” with their sons and daughters, must warn them about police brutality, tell them they will be treated differently because of their skin color. How can these parents act in the best interests of their children, knowing that the advice they give may not guarantee safety?
War-torn regions: How can parents in the countries where the US explodes an arsenal that includes drones and DNA-altering weapons act in the best interests of their children? Do they have a voice? How many children in these countries are offered US citizenship, as Charlie Gard and his family were?
I’m thinking of Charlie’s parents, that moment when they were shattered by his diagnosis and now are shattered by his death. And I think of children of war. War, delivered by US Empire. Aren’t we obligated to alleviate suffering instead of creating or exacerbating it?
Missy Comley Beattie has written for National Public Radio and Nashville Life Magazine. She was an instructor of memoirs writing at Johns Hopkins’ Osher Lifelong Learning Institute in Baltimore. Email: firstname.lastname@example.org.