Before she gave birth to her son, Charlie Gard, Connie Yates spent most of her time caring for people with severe disabilities.
In a column for Now to Love, Yates said she saw at work how doctors sometimes were wrong and gave up on patients too soon. It’s one of the reasons why she and her partner, Chris Gard, fought so persistently for their infant son.
The British infant died on July 28 after his life support was removed, following a lengthy court battle between his parents and hospital. He would have turned 1 year old on Aug. 4.
Charlie suffered from a rare mitochondrial disease and brain damage. He was at the center of a massive international debate after Great Ormond Street Hospital refused to allow an experimental treatment and also refused to transfer him to another hospital that would allow the treatment.
In her column, Yates remembered how doctors gave up on her son almost right away. Soon after they diagnosed Charlie with a rare mitochondrial depletion disease, she said the doctors told them to let Charlie die.
It was so rare, Charlie was believed to be only the 16th person in the world with it.
“There’s no cure,” the doctor told us gently.
Apparently one child had lived until he was four, but the others had died within months.
Both of us went into shock.
“It would be kinder to switch the ventilator off and let Charlie go peacefully,” the doctor continued.
“Let him die?” I gasped.
“Surely there’s something you can do?” Chris asked.
There was no way we could turn off his ventilator, not while he was still fighting.
Yates said she began doing extensive research about Charlie’s condition and emailed doctors all across the world to find answers. A man in the United States whose son had a similar disease contacted her and explained how his son benefited from an experimental treatment.
It gave Charlie’s parents hope, but their hopes quickly were dashed.
Yates described what happened in front of the judge:
We’d agreed that if two months of treatment didn’t work, or left him in pain, we would let him go.
When the doctors told the judge that Charlie was so badly brain damaged, as well as deaf and blind, that it wasn’t worth even trying the drug, we were completely shocked.
Then the doctor in the US said he hadn’t realised how sick Charlie was, and that he was “less enthusiastic” about treating him – although, importantly, he still said there was a chance.
“The doctors are wrong,” I pleaded to the court.
Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle. The court battle began in March.
U.S. neurologist Dr. Michio Hirano, an expert in the field, previously said Charlie had an 11 percent to 56 percent chance of benefiting from the experimental treatment. However, when Hirano and a group of doctors examined Charlie in late July, they said he no longer had a chance of benefiting from the treatment.
After Hirano gave his final opinion, Charlie’s parents decided to end the legal battle to get their son experimental treatment. Based on the new evidence, the couple said Charlie’s condition had deteriorated too much and there no longer was any hope of the experimental treatment working.
Then, at the end of July, the news broke that Charlie had died after his life support was removed. Later, Yates said Charlie opened his eyes and looked at them before he died.
His family said the money raised for his medical care will be used to start a charity to help other children with rare diseases.