A member of the medical team that treated Charlie Gard has defended the care they gave the British infant who died of a rare genetic disease while criticizing political and religious leaders for prolonging the family’s suffering by intervening in a case they didn’t understand.
The health care worker wrote in an anonymous opinion piece published in the Guardian newspaper Saturday that staff at Great Ormond Street Hospital in London “loved this child to bits,” but reached the point where they could do nothing more to help Charlie.
“You have contributed to the family’s pain, you have been fighting a cause you know nothing about,” the worker wrote. “It’s not been helpful to anyone.”
Charlie suffered from mitochondrial depletion syndrome, which left him brain damaged and unable to breathe unaided. His parents wanted to take him to the United States for experimental treatment and his case ended up in the courts when doctors opposed the plan, saying the untested therapy wouldn’t help Charlie and might cause him to suffer.
He died July 28, a week before his first birthday, after a judge ordered he be taken off a ventilator at Great Ormond Street Hospital and moved to a hospice for his final hours.
In an interview published Saturday, Charlie’s parents told the Daily Mail newspaper their son died 12 minutes after his respirator was turned off. Parents Chris Gard and Connie Yates then took Charlie home in a temperature-controlled “cuddle cot.”
“Once home, it was lovely to sit and watch him lying there like any other baby,” the Mail quoted Yates as saying. “Not surrounded by equipment and machinery, without anything obscuring his lovely face.”
Charlie’s case made it all the way to Britain’s Supreme Court and along the way became a flashpoint for debates on the rights of children and parents, health care funding, the responsibilities of medical workers and the role of the state.
The case caught the attention of Trump and the pope in late June after the European Court of Human Rights refused to intervene. The leaders tweeted support for the family, triggering a surge of grassroots action, including a number of U.S. right-to-life activists who flew to London to support Charlie’s parents.
In the Guardian article, the health care worker described the “soap opera” that followed the comments from Trump and the pope, arguing that the medical team kept doing everything they could for Charlie even though they believed “he should be allowed to slip away in his parents’ arms, peacefully, loved.”
“We didn’t do this for Charlie. We didn’t even do it for his mum and dad. Recently, we did this for Donald Trump, the pope and Boris Johnson, who suddenly knew more about mitochondrial diseases than our expert consultants,” the staff member wrote. “And we did it for the keyboard warriors who thought it was OK to write about the ‘evil’ medical staff at Great Ormond Street, even though we were still there next to Charlie, caring for him as best we could, as we always had.”
The medical worker also wrote about the toll Charlie’s case took on the entire staff of the hospital. Even friends asked, “Why are you trying to kill this child?” Parents of other young patients at the hospital were nervous about whether the right thing was being done for their children.
The worker concluded by imploring everyone on social media to think twice before commenting on “how awful we are.”
“The parents’ pain will be unimaginable, their loss immeasurable and incomparable,” the clinician wrote. “But we will live with this forever, too.”