Charlie Gard, The Tragic Baby Who Melted Trump’s Cold Heart

One of the world’s most controversial end of life cases reached the attention of President Trump, and triggered a very different response to the one he gave about Terry Schiavo.

President Donald Trump took a break from tweeting Reddit memes on Monday to weigh in on the case of London’s Charlie Gard, offering his “help” to a terminally ill baby at the center of a protracted legal battle over whether the 10-month old’s life support should be withdrawn against his parents’ wishes. The case has inspired sympathy and donations from people around the globe and sparked a debate over parents’ versus states’ rights.

Charlie suffers from a rare genetic disease known as mitochondrial DNA depletion syndrome. The disease causes progressive muscle weakness and extensive brain damage. As a result, Charlie is unable to breathe on his own and uses a ventilator.

His parents, Chris Gard and Connie Yates, have been fighting to send Charlie to the United States, to receive a medical intervention called nucleoside bypass therapy, an oral medication that has only been taken by a handful of sufferers, and none with Charlie’s specific faulty gene, but his doctors in the intensive care unit at Great Ormond Street hospital have argued the proposed treatment is experimental and has no chance of saving the baby’s life. “There is significant harm if what the parents want for Charlie comes into effect,” the hospital’s lawyer told appeal judges in May. Doctors also claim ongoing treatment would cause Charlie continued pain and prolonged suffering.

In an effort to have the baby removed from the hospital’s care and keep his life-saving ventilator in place, Charlie’s parents took to the British courts. But they lost a final appeal before the European court of human rights last week following multiple defeats before judges in the High Court, Court of Appeal and Supreme Court in London. After the final hearing in London, Yates screamed outside court, “How can they do this to us?”

Gard and Yates have raised £1.3 million from over 83,000 individual donations to move Charlie themselves, but the final ruling allows the hospital to end any life-saving efforts.

Yesterday, Pope Francis said he believed Charlie’s parents’ wishes should be respected—remarks which seemed an about face on Church doctrine, which states that people should not be kept alive with excessive medical intervention. Earlier this week, Archbishop Vincenzo Paglia who heads the Vatican’s Pontifical Academy of Life, weighed in on the matter. He declared that while the Church was close to the parents, they must also realize when the time has come to leave fate to God. “We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration” Paglia said. “We do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

Whether he was worried the Church would appear to be changing track on Euthanasia by supporting the British government’s ruling to let Charlie die, or whether he just became aware of the saga, Francis appeared to change the Church’s direction once again. Vatican spokesman Greg Burke told Vatican Radio that Francis was praying “with affection and emotion” and that he hoped the child’s parents’ “desire to accompany and care for their own child to the end is not ignored.” On Monday afternoon, the Vatican owned Bambino Gesu hospital, acting on the pope’s statement, offered to transfer and treat Charlie in Rome. Mariella Enoc, the hospital director, told reporters, “We are close to his parents in prayer, and if it is their wish, we are ready to welcome their baby to us, for the time he is alive. To defend human life, especially when it is compromised by illness, is a commitment of love that God entrusts to every man.”

Monday morning was the first time President Trump had addressed the controversy, and the extent to which he is offering U.S. assistance isn’t yet clear. During the campaign, Trump aligned himself with evangelical pro-life groups, some of whom have weighed in on the side of Charlie’s parents.

Trump has also proven combative with health care officials while aligning himself with parents’ rights groups in the anti-vaccine movement, by conspiratorially tweeting about the safety of vaccines and their scheduling.

Before his presidency, Donald Trump did address another controversial right-to-die debate. In 2005 Terri Schiavo died when her feeding tube was removed. The Florida woman had been in a persistent vegetative state for fifteen years during which her husband had been fighting her parents to order the removal of her feeding tube. The court cases surrounding the battle reached over a dozen state and federal courts, becoming a lightning rod for the pro-life movement, the right-to-die movement, and disability rights groups, as well as a cause célèbre for Congressional Republicans and President George W. Bush.

The Schiavo case also enthralled the public, and when she died, celebrities–including Donald Trump–were asked for comment. On ABC’s “The Insider,” Trump responded to news of Schiavo’s death.

“I found the worst thing, again, the way she died. To starve somebody for two and a half weeks is just deplorable. It was a big fight and I guess we haven’t heard the last of that. But that’s too bad.”

Asked if he had a living will for a situation like Schiavo’s, Trump said, “No.”

“I don’t even like thinking about stuff like that. I want to think positive. I want to think that life is going to be a bowl of cherries. And I hate thinking about it…A lot of the people want to go on, a lot of people don’t want to go on. Many people want to continue on as long as they can live. And then you have other people want to be terminated immediately.”

In the case of Charlie Gard, the Vatican and U.S. responses may be too late to make much of a difference. Life support was supposed to be withdrawn on Friday, but the hospital extended the efforts to provide the parents with time to say goodbye. “We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie,” Yates said onFriday. Charlie’s parents have also expressed disappointment with what they claim is the hospital’s insistence that their son not be moved to hospice or back to their home to die with dignity, sparking a #LetCharlieGoHomeresponse on social media.

Reporting contributed by Barbie Latza Nadeau

Source:  http://www.thedailybeast.com/