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World

Charlie Gard's Parents ask Court to let him Die at Home

"The parents' last wish is to take Charlie home for a few days of tranquility outside the hospital," family lawyer Grant Armstrong said

Vatican's Bambino Gesu' pediatric hospital director Mariella Enoc (right) and muscular and neurodegenerative diseases expert professor Luigi Bertini address the media during a press conference they held in the hospital's offices, in Rome, Tuesday, July 25, 2017, photo: AP/Gregorio Borgia
3 months ago

LONDON – Charlie Gard’s parents know their treasured son is about to die. They have one final wish — to take him home, put him to bed and kiss him goodbye.

The mother of the critically ill baby at the center of an international medical and legal battle returned to London’s High Court on Tuesday, asking a judge to let the family take Charlie home for “a few days of tranquility” before his ventilator is disconnected and he is allowed to “slip away.”

After months of court hearings over the 11-month-old baby’s fate that drew attention from Pope Francis, U.S. President Donald Trump and people around the world, discussion came down to the mundane, heart-wrenching details of ending a life: How could Charlie be transported from a hospital to his parents’ west London home? Could ventilation be maintained on the way? Would his ventilator fit through the front door of the house?

“The parents’ last wish is to take Charlie home for a few days of tranquility outside the hospital,” family lawyer Grant Armstrong said in a written statement.

He accused London’s Great Ormond Street Hospital, where Charlie is being treated, of putting obstacles in the way of that outcome.

The hospital’s lawyer, Katie Gollop, said Great Ormond Street wanted “above all” to fulfill the parents’ last wish, but also had to take the baby’s best interests into account.

“The care plan must be safe, it must spare Charlie all pain and protect his dignity,” she said.

The hospital said Charlie would be able to die with dignity, surrounded by his family, in a hospice. Armstrong said Charlie’s parents regarded that as the second-best option, “a notch better” than the hospital.

Judge Nicholas Francis, who has dealt with the emotionally draining case for months, said the sensitive issues cried out “for mediation” — not for the ruling of a judge. But so far attempts to find agreement have failed.

At the end of a hearing attended by Charlie’s mother, Connie Yates, Francis said he felt a hospice, rather than the family home, would be best. The judge said he would make his final ruling on Wednesday.

“I don’t think it’s fair to prolong their suffering any longer,” he said.

Charlie suffers from mitochondrial depletion syndrome, a rare genetic disease. He has brain damage and is unable to breathe unaided.

His parents — Yates and her partner Chris Gard — have battled for months to take Charlie to the United States for an experimental treatment they believed would improve his condition. Doctors at Great Ormond Street opposed that, saying it would not help and could cause Charlie more suffering.

British courts and the European Court of Human Rights have all sided with Great Ormand Street, one of the world’s leading children’s hospital, in its bid to remove life support and let Charlie die naturally.

The case drew international attention after Charlie’s parents received support from the pope, Trump and some members of the U.S. Congress.

U.S.-based pro-life activists flew to London to support Charlie’s parents, and the case became a flashpoint for opposing views on health-care funding, medical intervention, the role of the state and the rights of the child.

Some commentators portrayed the case as a clash between family and the state, and U.S. conservatives used it to criticize Britain’s government-funded health care system.

The feverish commentary led the judge to criticize the effects of social media and those “who know almost nothing about this case but who feel entitled to express opinions.”

At its heart, the case pitted the right of parents to decide what’s best for their children against the authorities’ responsibility to uphold the rights of people who can’t speak for themselves. Under British law, children have rights independent of their parents, and it is usual for courts to intervene when parents and doctors disagree on the treatment of a child.

Offers of help for Charlie came from Dr. Michio Hirano, a neurology expert at New York’s Columbia Medical Center and from the Vatican’s Babino Gesu pediatric hospital.

Both said an experimental treatment known as nucleoside therapy had a chance of helping Charlie.

Great Ormond Street disagreed. It said the proposed treatment had never been tried on a human with Charlie’s exact condition and no tests had ever been done on mice to see whether it would work on a patient like Charlie.

On Monday, Charlie’s parents abandoned their battle for treatment, saying that time had run out and the proposed therapy would no longer be effective because Charlie had severe and irreversible muscular damage.

“We are about to do the hardest thing that we will ever have to do, which is to let our beautiful little Charlie go,” Chris Gard said.

The couple continues to insist Charlie could have been helped had he received the treatment sooner.

Bambino Gesu director Mariella Enoc shared that view, saying at a news conference Tuesday that experimental therapy “could have been an opportunity” to help Charlie, but it was now too late to start care.

“I don’t know if Charlie could have been saved, but I know that a lot of time was lost in many legal debates that served no purpose,” the ANSA news agency quoted Enoc as saying.

 JILL LAWLESS

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