A British couple has been given more time with their terminally ill son, following an emotional court battle and uproar over when and where Charlie Gard would be disconnected from machines helping to keep him alive.
Charlie has a rare genetic condition and resulting brain damage that has robbed him of his ability to move his arms and legs, eat or breathe on his own.
His parents had said doctors at Great Ormond Street Hospital for Children in London were planning to remove the 10-month-old from life support Friday, but have now decided to postpone it.
“Together with Charlie’s parents we are putting plans in place for his care, and to give them more time together as a family,” a spokesperson for Great Ormond Street Hospital for Children NHS Foundation Trust confirmed in a statement to The Washington Post. “We would ask you to give the family and our staff some space and privacy at this distressing time.”
Charlie’s parents and their attorney could not immediately be reached for comment, and the hospital said it could not provide specific details about Charlie’s case.
British courts decided Charlie should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival, and Charlie’s parents argued there was an experimental treatment in the United States they had not tried. The case was taken all the way to the European Court of Human Rights, which declined to hear the case Tuesday, upholding previous court rulings that it was in Charlie’s best interest to withdraw life support.
Charlie’s parents, Chris Gard and Connie Yates, appeared on video Thursday, sobbing and saying their son would be removed from life support Friday and take his last breaths at the hospital.
“He’d fight to the very end, but we’re not allowed to fight for him anymore,” Gard said in the video statement. “We can’t even take our own son home to die.”
The parents said the hospital would not give them time to let family members say goodbye.
On Friday, Yates told the Daily Mail that the hospital had agreed to the parents’ request.
“We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie,” she told the Daily Mail. “We are really grateful for all the support from the public at this extremely difficult time. We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”
Charlie’s parents said that since November, they have been talking with medical personnel at Great Ormond Street Hospital for Children about their son’s end-of-life care.
One option, the couple said, was to let Charlie die at home.
“So we chose to take Charlie home to die,” his mother said in the video, which was posted on YouTube. “And we have said this for months that this is what we want. That is our last wish, if it went this way – the way it’s gone. And we’ve promised our little boy every single day that we will take him home because that is a promise we thought we could keep.”
Charlie’s father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.
“We’re now being denied that,” Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.
When asked about those claims, a spokesman for Great Ormond Street Hospital for Children NHS Foundation Trust said in a statement: “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.”
Monsignor Vincenzo Paglia, president of the Vatican’s Pontifical Academy for Life, issued a statement Friday, saying that the situation has “meant both pain and hope for all of us.”
“We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now,” he said in the statement, according to Vatican Radio.
He also noted the “heartrending pain of the parents” in trying to determine what is best for their child.
“The proper question to be raised in this and in any other unfortunately similar case is this: What are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine,” he said. He added that, “Likewise, the wishes of parents must heard and respected, but they, too, must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”
Charlie was born in August with a rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court records.
England’s National Health Service describes the condition this way:
“The term depletion refers to the markedly decreased amount of mitochondrial DNA found in muscle, liver and brain tissues in these disorders. These are severe disorders presenting in early infancy or childhood with profound weakness, encephalopathy, seizures and liver failure.”
Weeks after birth, Charlie was struggling to hold up his head and was not gaining weight. At the two-month mark, he had become lethargic, and his breathing had become shallow, according to court records.
Charlie was transported to Great Ormond Street Hospital for Children, where he has been ever since.
Earlier this year, doctors concluded nothing more could be done for the terminally ill infant. Charlie’s parents pushed back, arguing that there was an experimental treatment in the United States.
Charlie’s mother wrote on a GoFundMe page several months ago that she and Charlie’s father had hope:
“After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! 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.”
Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie’s best interest, for the hospital to remove the child from life support – even against his parents’ wishes?
In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote there was “unanimity among the experts” that the therapy could not repair structural brain damage.
“Transporting Charlie to the USA would be problematic, but possible,” he 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 the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”
An appeals court, then a supreme court, upheld it, according to the National Review.
After the European Court of Human Rights issued its decision on Tuesday, Great Ormond Street Hospital said it marked “the end of what has been a very difficult process.” But the hospital said in a statement, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
Yates, Charlie’s mother, said through tears Thursday that Aug. 4, 2016, was the best day of their lives because it was “the day that Charlie was born.” June 30, 2017, she added, would be the worst day of their lives.
“We know what day our son is going to die, and we don’t even get any say in what happens to him,” Charlie’s father said.
(c) 2017, The Washington Post · Lindsey Bever