By Dave Andrusko
To the outsider it’s difficult to fully understand why London’s Great Ormand Street Hospital (GOSH) and Justice Nicholas Francis were so dead set against allowing Chris Gard and Connie Yates to take their son Charlie to the United States for experimental therapy to try to ameliorate his exceedingly rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy.
I would never say they didn’t care for Charlie. Clearly they did. But “care” for them meant Charlie’s death. Why? Because “he has no quality of life and no real prospect of any quality of life,” as GOSH said repeatedly.
In other words, what’s the point? Since they were the experts (never mind that the parents had their own experts who disagreed), they knew what was in Charlie’s “best interests,” not his parents who were blinded by love (my characterization of GOSH’s and Justice Francis’ position which I am convinced is 100% accurate).
But there were other even more fundamental reason, addressed by Wesley J. Smith in a thoughtful column headlined, “Another Charlie Gard?”.
Remember the reason GOSH wanted Charlie’s ventilator disconnected was not because it wasn’t working but because it was. If Charlie had no quality of life, continuing to ventilate the little boy was just a step or two removed from ventilating a brain-dead patient. It served no purpose–on GOSH’s scale of values.
The staff at Alder Hey Children’s Hospital in Liverpool, England, wants little Alfie Evans’s life support removed. His dad, Tom, told the ECHO last month.
“They have said several times they want us to turn the life support machine off, and to consult our lawyers.
“But we have refused, and I always will. Now he opens his eyes and yawns occasionally, and he’s grown teeth while in there, changing from a baby to a toddler.”
Alfie’s condition is a “mystery.” He’s been in a coma in the hospital’s intensive care ward since last December, reporter Tom Belger tells us, and he suffers regular seizures. But staff cannot figure out why.
Like Connie Yates and Chris Gard, Tom Evans and Alfie’s mother Kate James want to take his son overseas for therapy.
Like Connie and Chris, they are fundraising to come up with the money.
But unlike Chris and Connie, Tom and Kate are receiving better responses to their request for medical treatment. More than a dozen American hospitals says they might be able to help.
“I’m pleading for help from anywhere now,” Tom told Berger. “I’ve been getting in touch with lots of hospitals, and I’ve had a particularly positive response from one in Miami, which has received Alfie’s details.”
So far, Berger explains, the couple “has not yet faced a court battle like and are hopeful it will not come to that.”
What has this to do with the response of GOSH and Justice Francis to Connie Yates and Chris Gard? Supremacy.
In England, and many other places in Europe, when it comes to treatment decisions for their children, the wishes of parents come in a distant second to the decrees of the Medical and Legal Establishments .
A win for Charlie, or for Alfie, could set a dangerous precedent –from their perspective. They would not have the first, middle, and last word.
And no one ever give up power without a struggle.