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HOSPITAL WISHES TO AVOID “UNNECESSARY AND PROLONGED SUFFERING” FOR STRICKEN INFANT
by Sharon Rondeau
(Jul. 27, 2017) — A British child just under one year of age will be sent to a pediatric hospice facility to spend his final hours, a judge ruled on Thursday after the baby’s parents and the hospital where he has remained on a ventilator for many months failed to reach an agreement over his end-of-life care by a noon deadline.
Having accepted that treatment is not an option, the parents of Charlie Gard, Connie Yates and Chris Gard, had hoped to bring him home with his life-support apparatus in place so as to spend a few days with him outside of a hospital setting, after which the ventilator would have been discontinued.
An alternative plan which his parents favored over that which was ordered on Thursday was for Charlie to go to hospice with the ventilator in place for a few days. That, too, was rejected by Judge Nicholas Francis.
Charlie’s case ignited emotions around the world over the last six weeks after his parents lost a final appeal to obtain the hospital’s permission to take him to the U.S. for experimental treatment for which they raised close to $2 million through a GoFundMe effort.
The UK’s medical system is the National Health Service (NHS), which claims that it places “control” of medical care in patients’ hands. Nevertheless, Gard and Yates were told that Charlie could not travel to the U.S. because he could endure more “suffering.”
Media reports have indicated that Charlie appeared a healthy baby at birth but that within two months, his muscle strength did not match that of healthy infants of the same age. His condition, diagnosed as mitochondrial DNA depletion syndrome, eventually caused deterioration to the point where Charlie became unable to breathe or move on his own.
Conflicting reports have emerged over whether or not a U.S. neurologist who flew to London on July 17 and examined Charlie continued to believe afterward that the experimental treatment he has used on at least one other child similarly-afflicted would have been effective. Dr. Michio Hirano of Columbia University’s Irving Medical Center was reportedly in communication with Gard and Yates since April, if not earlier, about the possibility of Charlie’s obtaining treatment there.
It was reported that via a video-conference during a court hearing over which Francis presided, Hirano stated that he believed that the treatment was “worth trying.”
On Monday, the BBC reported that Hirano had altered his opinion after examining Charlie and conferring with his British medical team. Also present was a specialist from the Vatican’s Jesu Bambino Hospital.
Hope for Charlie was renewed early this month after the Pope and U.S. President Donald Trump expressed support for the parents’ efforts to obtain treatment for their son only to be extinguished when on Monday, they announced in court through their attorney that they had ceased their quest to take Charlie to the U.S. because his condition was too far advanced to reverse.
A decision as to whether or not Charlie would be allowed to leave the Great Ormond Street Hospital (GOSH) to travel was to be rendered on Tuesday by Judge Nicholas Francis but was pre-empted by the parents’ announcement that they had abandoned their efforts.
Yates indicated in a statement that she believed that much precious time had been “wasted” such that the experimental treatment now has no chance of being effective.
On Wednesday, Yates posted on her Facebook page that she and Gard were seeking medical specialists willing to care for Charlie for whom they could pay privately if a plan could be agreed with GOSH staff.
The AP reported on Thursday that Francis issued an order for Charlie to be transferred to a hospice center at an undisclosed time. As hospice facilities are reportedly not licensed to provide life support, the child’s ventilator is expected to be removed once he is relocated.
In a statement reported on Thursday, the hospital said that “We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have had to be played out in court over such a protracted period.” Toward the end, the statement reads:
Great Ormond Street Hospital would like to reassure everyone who has followed this heart-breaking story that we always put the best interests of every single one of our patients above all else. While we always respect parents’ views, we will never do anything that could cause our patients unnecessary and prolonged suffering.
The priority of our medical staff has always been Charlie.
Charlie was born on August 4, 2016.