July 27, 2017 / 6:37 PM / in 2 months

#CharlieGard: social media turns family tragedy into global war of words

FILE PHOTO: People campaign to show support for allowing Charlie Gard to travel to the United Stated to receive further treatment, outside the High Court in London, Britain July 13, 2017. REUTERS/Peter Nicholls

LONDON - The social media frenzy surrounding British baby Charlie Gard has turned one family’s tragedy into a global debate, drawing donations and death threats, and views from the Vatican to the White House.

The hashtag CharlieGard has been used almost half a million times on Twitter since the beginning of last month. Google searches for the boy’s name in Britain have surpassed those for Prime Minister Theresa May and, worldwide, for the U.S. healthcare bill that has loomed large in Washington politics.

The 11-month-old baby, who suffers from a rare genetic condition causing progressive brain damage and muscle weakness, has been the subject of a legal dispute between his parents and Great Ormond Street Hospital (GOSH) in London.

The case centered on the heart-rending ethical dilemma of who should decide a child’s fate - parents or doctors. Charlie’s mother and father had tried to take the boy to the United States for experimental treatment but the hospital argued it would simply prolong his suffering - a view backed by the courts.

This week, after accepting there was no hope left, the parents Connie Yates and Chris Gard have sought to agree on arrangements for their son’s final days and death. A deadline passed on Thursday for them to agree arrangements to spend more time in a hospice with Charlie before his death, though it was unclear whether any compromise had been reached.

As the harrowing legal fight unfolded, the online interventions of Pope Francis and U.S. President Donald Trump were instrumental in whipping up public interest, Google analytics show, transforming the case from a domestic debate into a worldwide phenomenon.

The Catholic pontiff’s tweet on June 30 - “To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all” - saw global searches for Charlie Gard spike by 285 percent in a day.

Trump’s tweet three days later - “If we can help little Charlie Gard, as per our friends in the UK and the Pope, we would be delighted to do so” - drove searches up 75 percent.

The sheer number of people weighing in on who should decide the child’s fate, at home and abroad, prompted the presiding judge in the case to denounce ill-informed online comments.

“The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based,” Nicholas Francis said.

He referenced “absurd” online comments about Charlie being a prisoner of Britain’s public health service, or saying that the health service had the power to decide the boy’s fate.

DONATIONS, DEATH THREATS

Charlie’s parents posted frequent updates on social media including YouTube, Facebook and Instagram to draw attention and support for their son, who requires invasive ventilation to breathe and cannot see, hear or swallow.

A crowdfunding page set up by his mother raised more than 1.3 million pounds ($1.7 million) to go towards his treatment.

Posts shared on a Facebook page updated by Charlie’s family members received thousands of comments, with many expressing support for the family, but also venting anger at the judges, the hospital and even the parents.

“This little boy could have had the chance of improving and they have left him so long that it isn’t going to make any improvement. Judges should be ashamed of themselves, if the boot was on the other foot and it was one of their own what would the outcome be then?” said one user.

“It’s sad that the parents could not accept the death of their child and prolonged the suffering of their baby,” another wrote on Facebook.

“It’s very difficult not to be utterly pissed at GOSH and the UK for not allowing him the experimental treatment. I am so disgusted with that hospital,” another post said.

The world-renowned children’s hospital said its staff had received online death threats and abuse.

“In recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance,” said GOSH chairman Mary MacLeod. “Thousands of abusive messages have been sent to doctors and nurses whose life’s work is to care for sick children.”

Charlie’s parents, who have condemned the abuse of GOSH staff, said they had also received a torrent of hate from people who disagreed with their legal battle.

AMERICAN ATTENTION

Outside Britain, the case has captured particular attention in the United States where it has been seized upon by politicians as well as anti-abortion groups.

Two Republican congressmen, Brad Wenstrup of Ohio and Trent Franks of Arizona, introduced a bill to make Charlie a permanent U.S. resident to expedite the process for him to come to the United States for treatment.

“Let both our nations be reminded of the risk incurred when doctors or bureaucrats are empowered with ultimate authority to determine which lives are unworthy of being lived,” Wenstrup and Franks said in a joint statement on Tuesday.

U.S. Rev. Patrick Mahoney, director of the anti-abortion Christian Defense Coalition, flew to London earlier this month to visit Charlie and support his parents. He said that the hospital had showed “a complete lack of sensitivity.”

Paul Sutton, an Oxfordshire-based independent social media consultant, described the social media attention about the story as “explosive.”

“It’s an extremely emotive issue. It’s one you can’t fail to be touched by,” he said. “Social media definitely had a big role to play in bringing this story to more people, globally especially. It generated an emotional reaction, which then drives even more social activity.”

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