The parents of terminally ill 10-month old Charlie Gard are getting a final reprieve, albeit a temporary one. Earlier this week, U.K. couple Connie Yates and Chris Gard lost their final appeal to keep their irreversibly brain damaged baby alive via life support and (possibly) seek experimental treatment in the United States. Following their devastating rejection of their appeal by the European Court of Human Rights, Charlie Gard’s heartbroken parents had expected their baby’s life support to be turned off on June 30.
Charlie is currently receiving life-sustaining treatment at the Great Ormond Street Hospital, where the baby and his parents have lived for months following his devastating diagnosis of mitochondrial depletion syndrome. The syndrome is exceedingly rare, with Charlie Gard being one of just 16 people in the world known to suffer from the condition, which results in extreme muscle depletion and weakness.
As a result of his mitochondrial disease, 10-month-old Charlie Gard (who appeared to be perfectly healthy at birth and didn’t begin showing symptoms until he was roughly 8-weeks-old) is blind, deaf, incapable of swallowing or breathing on his own, and profoundly brain-damaged. According to the European Court of Human Rights (as well as the Family Division of the High Court in London and Court of Appeals), Charlie’s life consists of little more than pain and suffering and he should be allowed to “die with dignity.” Specifically, doctors have claimed that keeping Charlie alive would “continue to cause Charlie significant harm.”
However, his parents’ objected and hoped to bring their son to the U.S. for experimental treatment.
The parents of Charlie Gard have been fighting for his life much of his short, devastating life. They have argued that his brain damage is not as severe as doctors have alleged and have been battling to fly their son to the United States for targeted experimental treatment for his mitochondrial disease.
Medical professionals and the highest courts in the U.K. and Europe, however, have argued that no amount of treatment can ever make Charlie well. Even if his mitochondrial condition is treated or even cured, his brain damage will remain. Doctors say that Charlie Gard can never hope to have any measurable quality of life, and to keep him alive will only prolong his suffering.
On June 27, and despite the nearly £1.4 million the parents of Charlie Gard have raised on GoFundMe to pay for his trip to the U.S., the European Court of Human Rights upheld earlier lower court decisions to allow doctors at the Great Ormond Street Hospital to end Charlie’s suffering by removing him from life support.
Yesterday, Chris Gard and Connie Yates put forth yet another emotional appeal to the general public and Charlie’s supporters. The bereaved couple claimed that the hospital was “rushing” them by demanding that 10-month old Charlie Gard be removed from life support on Friday (today) and lamenting that the doctors at the Great Ormond Street Hospital would not allow them to take their baby home to die.
As BBC News reports, the parents of Charlie Gard claimed to be “massively let down” by the hospital’s refusal to let them take their son home, as well as the fact that the quick timetable to remove the baby from life support would prevent many of his loved ones from saying their final goodbyes. Even so, the devastated parents had camped themselves out in Charlie’s hospital room, vowing to spend every possible second with their son.
“We are utterly heartbroken spending our last precious hours with our baby boy. We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies. We, and most importantly Charlie, have been massively let down throughout this whole process.”
In response to these claims by Yates and Gard, the Great Ormond Street Hospital refused to comment publicly on their decisions regarding the end of life care of Charlie Gard.
“As with all of our patients we are not able to, and nor will we, discuss these specific details of care. This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”
However, on Friday the hospital changed its tune and made it known that Charlie’s parents will be getting a little bit more time with their dying baby. An exact timeline of withdrawal of care has not been made public, but prior to the hospital’s announcement, the parents of Charlie Gard had asked to have one final weekend with their son.
[Featured Image by Connie Yates/GoFundMe]