In an interview with the Daily Mail, Connie Yates and Chris Gard opened up about the day that their little boy passed away. After months of struggling to give him a chance at life with experimental treatment, Charlie died a mere one week shy of his 1st birthday on August 4th.
Up until July 29th, they fought for the right to take their little boy home to die, or at least to spend more time with him in a hospice. Once again, the judge decided against them, and they were given less than 24 hours to say goodbye to their little boy before he'd be taken to a hospice for a few hours.
The night before he was transferred to the hospice, Connie and Chris say they couldn't sleep. Instead, they spent those precious hours looking at and talking to their baby.
"We pushed another bed against his bed and Chris and I lay either side of him,’ says Connie. ‘We didn’t want to sleep because we wanted to savour every moment with him."
She continued, "We cuddled him and told him how much we loved him. We took photos of his hands, feet, fingers and toes. Every second with him was precious. We never wanted to forget how beautiful he was."
When morning came, Connie realized she only had a few hours left with her son. She frantically emailed the judge to beg for some more time with Charlie.
"I cannot begin to describe the feelings you have as a mother knowing your child is about to die. I hoped for some compassion, but he emailed back saying it simply wasn’t possible because GOSH didn’t agree."
So at 6:35 am on July 30th, GOSH staff arrived to transfer Charlie to a hospice clinic. Connie says that leaving the intensive care unit at Great Ormond's Hospital for the last time after nine-and-a-half months felt surreal.
"The photos of Charlie, the days and nights we’d spent there at his bedside, the rushing back to see him from the hearings. It held so many memories," shared Connie. "On the one hand, I longed to leave the hospital: we didn’t want Charlie to die there. And yet, a huge part of our lives was coming to an end in such a tragic way."
After a 45-minute drive—in a car not in the ambulance with Charlie—the parents were given five more hours with their son. They made the most of it. They took him out for a walk in the hospice park, and they took plaster of Paris molds of his hands and feet.
"We dressed him in a Babygro with stars on it. He looked so beautiful and innocent. The hospice staff popped in. Those last five hours had flashed by. A woman said the moment we dreaded would happen in the next five minutes," shared Connie.
Twelve minutes after hospital staff removed the ventilator, Charlie's sad fight came to an end with his parents laying next to him and telling him that they loved him. Staff had told them that it would take five or six minutes for his heard to stop beating, but Charlie lived twice as long—something Chris said was typical of his "fighter."
Afterward, a nurse removed the ventilator tubes and tape. For the first time in months, they got to see their child without anything obstructing his face.
"I held him in my arms. It was amazing to see him without the ventilator," said Connie. "Through sobs, Chris and I marvelled at how beautiful our son was."
In the end, Chris and Connie got to take their son home, but only after he had died. Staff gave them the option to take him in a temperature-controlled "cuddle cot," which would allow them more time with their child before he had to go to a funeral home.
"Before, I’d always thought maybe taking your child home in such a cot would be rather odd," shared Connie. "But ultimately, it felt perfectly natural to leave the hospice with Charlie and take him with us."
The couple hadn't been back to their house since last October, when they took Charlie in for treatment. After he was admitted to intensive care at GOSH, they never went home. Instead, relatives had picked up things they needed, and they stayed in housing near to the hospital when they weren't in the hospital room with Charlie.
Coming home with Charlie for the last time was bittersweet.
"We had got our last wish to bring him home, but Charlie was no longer alive," said Connie.
She continued, "Charlie was still warm as we carried him through our front door...The moment was very emotional."
The couple says they are still finalizing funeral arrangements for their little boy. They also share that they aren't sorry they fought GOSH, or that they went to the media—even if it did cause some to call them attention seekers.
"We lost a lot of our privacy and have coped with the nastiest online abuse so that we could raise valuable issues—and not just for us," says Connie, who shares that the couple wanted to highlight whether parents should lose parental responsibility when they take their child to a hospital, and if a hospital should be able to block them from seeking treatment elsewhere.
"Surely these are issues which could affect any parent that we should be discussing. We, as parents, should not be criticised or ashamed for raising them."
As for the 1.3 million pounds they raised to treat Charlie, they will be using it to help other parents who find themselves in the same position. They will call it The Charlie Gard Foundation, and Connie plans to dedicate her life to it.
"We can only hope hospitals learn from our case. We believe Charlie was sent to us for a reason. And we will ensure that his death wasn’t in vain."
Often parents who go through stressful times separate, but the couple says they see themselves together in the future. They also say they haven't ruled out having another child together.
"Charlie brought such joy and love into our lives that we can’t possibly imagine not having a family in future. We both feel going through this together has made us closer."
Another U.K. family is also fighting to keep their baby alive. Read about Alfie and his parents.