The heartbroken parents of a brain-damaged 11-month old baby boy can’t choose if their son lives and can’t choose when or where he dies.
Charlie soon after birth.
Charlie Gard was born on Aug 4, 2016, in Bedford, Middlesex, England.
In September, symptoms that all was not well appeared and doctors discovered that he suffered from a rare genetic condition known as mitochondrial DNA depletion syndrome, which is said to only affect 16 children in the world.
Weeks after birth, Charlie was struggling to hold up his head and was not gaining weight.
At two months, he had become lethargic and his breathing had become shallow.
Charlie was admitted to Great Ormond Street Hospital for Children, where he has been ever since.
Earlier this year, doctors concluded that nothing more could be done for the terminally ill infant.
Charlie’s parents pushed back, arguing that there was an experimental, albeit unproven, therapy in the United States.
Great Ormond Street Hospital went to the courts and received permission to discontinue life support – against the wishes of Charlie’s parents.
Chris Gard and Connie Yates, Charlie’s parents, had hope in the American doctor they had managed to find after extensive research and speaking with doctors all over the world. The American doctor had successfully treated another mitochondrial depletion syndrome called TK2 and had agreed to accept Charlie in his hospital.
“We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain,” Charlie’s mother wrote on a GoFundMe page several months ago.
In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the therapy could not repair structural brain damage.
“His brain, muscle and ability to breathe are all severely affected. In addition, he has congenital deafness and a severe epilepsy disorder,” a professor who specialises in mitochondrial diseases told the UK High Court.
“Transporting Charlie to the USA would be problematic, but possible,” Francis wrote.
“Subjecting him to nucleoside therapy is unknown territory – it has never even been tested on mouse models – but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
He said it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” he decided that the hospital let Charlie “die with dignity.”
An appeals court, then a supreme court, upheld the decision.
On Jun 27, the parents lost a bid to take Charlie to the US for trial therapy when the European Court of Human Rights sided with earlier rulings that continued treatment would cause “significant harm” and that life support should end.
Great Ormond Street Hospital said it marked “the end of what has been a very difficult process.”
Charlie is unable to breathe unaided. On Jun 30, his parents had expected the hospital to end life support for their son.
But later in the day, the hospital said in a statement that “together with Charlie’s parents we are putting plans in place for his care and to give them more time together as a family.”
Hospital officials also asked that the family and hospital staff be given “space and privacy at this distressing time.”
It’s not clear how long life support will be continued for Charlie.
His parents had complained that the hospital wouldn’t allow Charlie to be brought home to die.
The boy’s parents released a video saying, “we’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies.”
Charlie’s case has gained attention online, raising nearly US$1.8 million on GoFundMe to send him to the US.
Yates has said previously that the funds will be used to support other children with similar genetic disorders should they lose their case.
“We are utterly heartbroken,” Charlie’s parents wrote in a post on Facebook. “We and most importantly Charlie have been massively let down throughout this whole process.”