The case of Charlie Gard – a brain-damaged British infant on life support due to a rare mitochondrial disease – has pitted a children’s hospital against parents in a legal battle over what is in the best interests of the child.
Charlie’s parents opposed his doctors’ preference to move the baby to a palliative care regime and take him off life support. They wanted to take the 11-month-old to America for experimental nucleoside treatment, a trip they had raised more than £1.3 million ($1.68 million) to pay for via crowdfunding sites.
The decision went to Britain’s High Court and eventually to the European Court of Human Rights. The ECHR agreed with the domestic courts’ ruling in favor of the hospital, who argued that the experimental treatment won’t end the child’s suffering, and that Charlie should be allowed to die with dignity.
But despite the E.U. court declaring its June 27 decision as “final,” a judge allowed a new hearing to take place July 13, in light of new evidence showing that the untested therapy could be effective. On Thursday, the U.K.’s High Court heard that a U.S. neurology professor – who cannot be named for legal reasons – contacted Great Ormond Street Hospital after speaking to the White House, to offer new evidence that the trial treatment would be more successful than previously thought. The case was ongoing on Friday.
The twist in the legal case comes as a movement to bring Charlie to the U.S. has become an international campaign, bolstered by the involvement of conservative groups from the United States led by Catholics and evangelicals . Major attention on the case first picked up outside the U.K. when Pope Francis said in a Vatican statement that he was following the case “with affection and sadness” and prayed that Charlie’s parents’ “wish to accompany and treat their child until the end isn’t neglected.”
The following day President Donald Trump tweeted to his 33.7 million followers that he would be “delighted” to help Charlie, and the saga reached an entirely new audience. Suddenly, the case of Charlie Gard was being discussed in churches and by socially conservative groups across the U.S. On July 6, the Susan B. Anthony List, March for Life, Concerned Women of America and Americans United for Life — all socially conservative groups active in opposition to abortion — held a joint press conference in Washington D.C., where they announced the launch of a campaign to ‘Save Charlie Gard,’ including a petition and a “social media push” to raise awareness and support for Charlie and his parents.
“Who do we think we are [to] decide who gets to live and who doesn’t, whose life is valuable and whose is not?” Penny Nance, CEO and president of Concerned Women for America, told attendees during the event. “This is way above our pay grade. This is a matter for God.”
To underscore the point, some churches and conservative groups have sent individuals to Britain to lend Charlie’s family support. One day after the July 6 press conference, Catherine Glenn Foster, president of Americans United for Life, arrived in London to provide legal counsel for the Gard family in their ongoing court case. That same week, Rev. Patrick Mahoney, a well-known U.S. evangelist who was once jailed for defying a court order that prevented him from demonstrating outside abortion clinics in Texas , flew to the U.K. to pray at Charlie’s bedside.
The efforts also continued back in the U.S. After the New York-Presbyterian Hospital/Columbia University Irving Medical Center offered to admit and evaluate Charlie if emergency approval was received from the FDA, two Republican congressmen proposed giving Charlie American citizenship. The politicians Brad Wenstrup and Trent Franks said in a joint statement that they hoped to “make Charlie a lawful permanent resident in the U.S.” in order for him to receive treatment, treatment his Great Ormond Street Hospital doctors described in a statement as “futile — meaning it would be pointless or of no effective benefit.”
“It’s interesting to consider why a tiny baby an ocean away has captured the imagination of the United States,” said Marjorie Dannenfelser, president of the Susan B. Anthony List, in a phone interview with TIME. “I think it’s something fundamental that has really touched a chord. You don’t have to be an ethics professor or a legal scholar to understand that an institution is not a parent… and they are the only ones who will truly make the decisions that are in a child’s best interest.”
Dannenfelser first learned the details of the Charlie Gard case during a meeting in the White House with Vice President Mike Pence. The Vice President’s office confirmed to TIME that Pence has been following the developments of the case closely, although he has not raised it through diplomatic channels.
“We got into this conversation and [Pence] was very emotional about it,” Dannenfelser said. “The more we discussed it, the more we knew we had to do something about it.” The following morning, she communicated the ‘Save Charlie Gard’ message to her organization, which has nearly 500,000 members, and banded together with other heads of similar U.S. groups opposed to abortion to hold the press conference.
“The hope is that the Gard parents will be allowed to care for Charlie in the way they want to,” she told TIME. “I don’t know if [our work] will have an effect on the judge , but I do know that sometimes when people make decisions they don’t realize they have touched a nerve. And I think this judge and this hospital will now understand they have touched a deep nerve and that the whole world is watching. And when you think the world is watching, you’re very careful with your decision-making.”
Upon learning of the judge’s decision to hold the July 13 hearing, Pastor Mahoney implied in a Facebook post that his prayers had been answered, writing: “While I was praying in front of the hospital [an] incredible statement came from them that they are having a court hearing on new information regarding Charlie’s case.” That same day, the Gard family’s former spokeswoman expressed her fears in a Guardian interview that Mahoney was using the “vulnerable” family’s situation to further his own political and religious crusade. “Mahoney appears to be seizing on their case to make the most of it,” she said.
Religious figures in the U.K. have also voiced concerns about the involvement of outside groups. Thomas Williams, an Auxiliary Bishop for the British city of Liverpool, questioned the motives of some external actors. “It’s a terrible situation for both the family and the hospital,” he told TIME. “I’ve always accepted, as a priest and a hospital chaplain, that people need to be allowed to die and sometimes nature needs to take its course. The right-wing element of these evangelicals, I’m afraid I’m not down that line at all… I can’t read their minds, but I do think that people will stand on soapboxes when situations arise.”
Physicians have noted that, medically, the experimental therapy isn’t a cure and has only a small chance of stopping Charlie’s condition from getting worse. (TIME reached out to Great Ormond Street Hospital for comment on the treatment, but was unsuccessful.)
This kind of intervention is “very unusual” in the U.K, said Professor Neena Modi, president of the U.K.’s Royal College of Paediatrics and Child Health. Although she did not want to comment specifically about the Charlie Gard case she told TIME external groups rarely attempt to intervene in such an overt way. “It comes as a great surprise to me to see these interventions being made,” she said. “First and foremost, you would think these organizations and individuals would understand that they are not privy to all of the details [due to patient confidentiality], so how can they be commenting in the full light of all knowledge?”
Nevertheless, the campaign by social conservatives from the U.S. has undoubtedly had a major impact on the case. The fresh evidence presented in Thursday’s hearings might not have emerged had it not been for the involvement of the White House, and Charlie’s family believes the campaign may have saved their child’s life. Gawain Towler, who was recently hired as the Gard family’s publicist, told TIME that he thought the July 13 hearing “would not have happened” without foreign supporters piling on the pressure. “The judge has said he won’t be affected by [social media], but this is common law, and public opinion matters in common law,” he added. “To ignore public opinion is counter to everything our legal system stands for.” source
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