Baby Charlie remains on life support as parents fight doctors for experimental treatment
He can’t cry, kick his legs, or breathe unassisted. His body is growing, his brain is not.
Baby Charlie Gard, three weeks shy of his first birthday, suffers from a rare degenerative disorder. There is no cure. He’s being kept alive on a ventilator at a renowned children’s hospital in London where doctors want to take him off life support to allow him to “die with dignity.” But Charlie’s parents are in a bitter fight to try one last experimental treatment in the U.S.
“He wakes up, he enjoys his tickles, we lie next to him,” says his mother, Connie Yates.
“If he was suffering I couldn’t do it, I promise you.”
But that’s one of the many disputed facts; doctors say prolonging his life is causing suffering, and no existing treatment can save him.
The Pope, U.S. President Donald Trump and a variety of lawyers, ethicists and doctors have all weighed in on the British baby’s fate, which could be decided in a U.K. court on Thursday. As Charlie lies mute, an impassioned debate swirls around what rights parents have to control their children’s medical care.
Two previous courts have ruled with the doctors at London’s Great Ormond Hospital. The case is now being heard at Britain’s Supreme Court. Under British law, in the rare case when a dispute arises over a child’s treatment, a hospital can take it to the courts to decide.
On Monday, in an emotional, high-spirited hearing before the court, Judge Nicholas Francis ruled the parents had until Wednesday to deliver new evidence of treatment they believe could benefit their son.
Experimental drug therapy
“I’m still fighting for the same thing that I’ve been fighting for since November 2016,” says Charlie’s mother. Even a 10-per-cent chance of improvement, at best, is “a good enough chance to take oral medication with no major side effects,” she says.
A health-care facility in the U.S. has agreed to care for the baby and administer the experimental treatment, nucleoside bypass therapy. It is not curative, but the family’s lawyers argue it could slightly improve the baby’s underlying condition.
Born healthy, Charlie Gard’s muscles began to fail around six months. Doctors discovered he had inherited the faulty RRM2B gene that inhibits the cells from making energy and had mitochondrial depletion syndrome. His current care team says subsequent seizures in January caused irreparable brain damage. His parents disagree.
“I’ve yet to see something that tells me my son’s got irreversible structural brain damage,” says Yates.
Other children on medication ‘getting stronger’
“There are 18 children currently on the medication there. They all have mitochondrial depletion syndrome as well as Charlie, but theirs is caused by a slightly different gene. They’re all getting stronger,” she told the BBC.
“This isn’t about the parent’s right to control what happens to their child,” says Penney Lewis, co-director of the Centre of Medical Law and Ethics at Kings College London.
“Parents don’t have that right, [but] they do have a responsibility to take care of their child as best they can.”
“I think one of the things that seems so heartbreaking is that the parents really believe that he could be saved, that he could have a much improved quality of life, and that doesn’t appear to be what the evidence suggests,” says Lewis.
Support for petition, crowdfunding
Yates and Charlie’s father, Chris Gard, have used social media to their advantage to spread the word and to crowdfund enough money on GoFundMe for them to travel to America for treatment. More than 400,000 have signed a petition calling on doctors to allow the baby to travel to the U.S., a Facebook page charts their legal steps, and an American Christian group protesting euthanasia has arrived in London promoting #IamCharlieGard on Twitter.
The world’s most high-profile tweeter, U.S. President Trump, interjected his opinion on Monday: “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
‘I think sometimes one loses sight of a very very unwell child. Because it becomes a kind of political circus in some sense.’ – Penney Lewis, bioethicist
Then on Wednesday, U.S. Vice President Mike Pence used the case to make a political point in America’s health-care debate. Speaking to Rush Limbaugh on radio, Pence said the baby Gard case is evidence the “single payer” system of medicine doesn’t work.
“The mother and father should be able to choose the lifesaving treatment that’s available … instead of submitting to a government program which says, ‘No, we’re going to remove the life support from your precious 11-month-old child.'”
Doubts over treating ‘very unwell child’
But the experimental treatment will not save Charlie Gard’s life, argue many top physicians in the U.K.; if it would doctors at Great Ormond wouldn’t hesitate to administer it.
“I think it is disturbing to watch,” says bioethicist Penney Lewis. “I think sometimes one loses sight of a very very unwell child. Because it becomes a kind of political circus in some sense.
Britain’s top pediatrician, professor Neena Modi, wrote in an open letter, “Charlie’s situation is heartbreaking for his parents, and difficult for everyone, including the doctors and nurses looking after him.”
She said the interventions from high-profile figures are “unhelpful.”
But as Charlie lies in his tiny hospital cot, with round-the-clock care, his parents believe all the international attention has “saved his life so far.”
“We’re not strong people, but what is strong is the love for our little boy,” says Chris Gard. “He’s kept us going through all of this.”