Connie Yates, the mother of terminally ill baby Charlie Gard, wrote a heartbreaking column for Now to Love published Monday which detailed her love for her son and the ordeal she and Charlie’s father went through with their baby.
Charlie Gard passed away last month after a legal battle with the Great Ormond Street Hospital in London. The hospital wanted to remove life support arguing that it was in Charlie's "best interests" despite the parents having raised funds to take Charlie to the US for an experimental treatment. Charlie’s parents gave up their court battle when a doctor determined Charlie was too far gone for the experimental treatment. The case caused debate on parental rights and healthcare. Pope Francis and President Trump both issued statements siding with Gard’s parents.
Yates describes her first moments with her baby writing, “the midwife placed a tiny bundle into my arms and I gazed down at my baby boy, Charlie. Just like that, I understood it - it was love at first sight.”
But things began to go seriously wrong when “at eight weeks old, Charlie began to refuse his breastfeeds, which meant he started to drop in weight. I was worried - he felt strangely floppy in my arms, too.”
The doctors told her that Charlie had “something called RRM2B - a type of mitochondrial depletion disease."
Charlie’s parents went into shock when they began to realize what this disease was.
“It was so rare, Charlie was believed to be only the 16th person in the world with it,” she recalls adding that the doctor told them there was no cure.
The doctor told them, “it would be kinder to switch the ventilator off and let Charlie go peacefully."
“There was no way we could turn off his ventilator, not while he was still fighting,” she emphasized.
Yates shares that she had a job caring for severely disabled people, "so I knew doctors could be wrong. I became an expert in mitochondrial disease, emailing doctors all over the world.”
She heard about the experimental treatment in the US this way.
After receiving pushback from the hospital about the treatment, Yates said they “were still being told to turn off life support.”
Yates refused to give up and launched a fundraising campaign that went viral.
“The hospital wasn't giving up either,” she wrote. “We were issued with some documents that said we were being taken to court.”
"Surely the judge will give our son a chance," she hoped.
“Because of Charlie's condition, which meant he couldn't move, it was impossible to tell the extent of his brain damage,” she says, adding, “Chris and I didn't believe he was as badly affected as doctors said.”
“We could soothe him to sleep by stroking his hair and tickle his feet to wake him up," she recalled. "He at least deserved the opportunity to have treatment.”
She recalls that when the judge decided against them “I heard Chris let out a howl. I was so upset I had to be helped out of the court.”
Charlie’s parents wrote a final statement after they agreed that it was too late for their son to undergo the experimental treatment and withdrew their case.
“We are now going to spend our last precious moments with our son Charlie, who unfortunately won't make his 1st birthday in just under 2 weeks' time,” they wrote. “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.”
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