Miranda Day was born with a rare type of congenital scoliosis and a tethered spinal cord, a condition where the spine is split into two and entwined towards the tailbone. After her first surgery in her family’s home state of California, it became clear to doctors that it wouldn’t be her last. “Scoliosis isn’t life-threatening, but it can be a detriment to your well-being,” says Day. “My parents’ goal was to give me the best quality of life and not have any setbacks physically or otherwise.”
A few weeks ago I sent out a tweet about something that I’d been noticing a lot in clinic that makes me sad. It’s remarkable, I said, how often patients don’t tell their doctors when they don’t understand, or when their instructions are impossible.
A tweet came back: It’s remarkable how often doctors don’t ask if we understand or if their instructions are possible.
The tweeter was the mom of a kid with special health care needs (actually, more than one kid). As we tweeted back and forth about her experiences, it hit me how crucial good communication is when there is medically complex stuff going on. So I asked her if she would help me write a blog post about the things parents like her wished doctors knew—or would ask.
Sure, she said. She talked with some of her friends who also have kids with special health care needs, and this is what they came up with: …