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Sunday April 11, 2021
Many years ago, when our son was still alive but not yet a teenager, our family watched a made-for-TV movie called “The Boy in a Plastic Bubble.”
It had little to commend it. Even the story line was a bit hokey – a boy born with no immunity to anything. To have any kind of normal life, he lived inside a large plastic bubble that isolated him from everyone.
It seemed to me, at the time, that it also reflected the life that our son had to lead. Because he had CF, cystic fibrosis, he had to be protected from anything that might lead to a potentially fatal lung infection.
When the movie ended, our son yawned, stretched, and said, “Okay. I’m going to bed.”
On a sudden impulse, I asked, “Do you ever feel like that boy in the bubble?”
He was frozen for an instant. Then he burst into tears.
Categories: Sharp Edges
Tags: bubbles, CF, isolation, trauma
Earlier this week, TV host Jimmy Kimmel told his studio audience, multiplied by millions on line, about his infant son’s emergency heart surgery.
Kimmel choked up as he described the events. A normal birth. In fact, an easy birth. Then, three hours later, an alert nurse noted a heart murmur, a purplish skin tone. A newborn infant rushed into surgery to repair a hole in his heart wall and a sticking valve.
Kimmel made the case for universal medical care when he said, “If your baby is going to die and it doesn't have to, it shouldn't matter how much money you make.”
Canadians, watching those TV clips, might have felt complacent. After all, we have a universal “single-payer system” that covers those costs.
Maybe not. Recently, I’ve been hearing about a drug that B.C. and several other provinces refuse to pay for.
Tags: Drugs, Orkambi, health plans, Cystic Fibrosis, CF