By Sandy Ho
I’m at that weird age where I really shouldn’t be going to a children’s hospital anymore, but I’ve been going to Boston Children’s Hospital since birth—I’m even on a first name basis with the Big Apple Circus Clown Care Unit. I’m comfortable there. They know me and I know them. But this isn’t just a matter of familiarity; it’s a matter of logistical ease. I have a brittle bone condition known as osteogenesis imperfecta (OI), and how each person with OI adapts to life tends to be very different. Having a care team that knows what has worked for me in the past (and what hasn’t) matters a lot.
It matters not only in the sense of saving time on those hour-long health care visits, but in the sense of how much pain will I be in, or how I make plans for the future. When I was little I remember my parents taking me to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician in 20 minutes, I would have to make the rounds to each floor of the hospital.
When I was 5 or 6 I thought it was fun. Trying to pronounce words like “audiology” “ophthalmology” and “radiology” made hospital visits sound like a trip to some whimsical village in a Dr. Suess book. My mom would somehow finagle my appointments into one day, she’d pack a cooler with snacks and sandwiches, stuff my backpack with books and we’d be off for a picnic at the hospital.
It was a long day, but I really enjoyed hanging out at Boston Children’s. Every possible surface is covered in a swath of bright, child-friendly colors. The Patient Entertainment Center has arcade games to play for free, hospital clowns roam the halls (and seemed to follow me wherever I went), the TV in the waiting room was always tuned into cartoons and there were endless pages to color and volunteers passing out stickers in the hallways. If you take away the needles, white coats and scrubs, Boston Children’s feels like an exciting day care or summer camp. In other words: it’s fun. (Please note the use of present tense in that last statement).
Life with OI isn’t always easy, but in terms of my health care, I have been ridiculously spoiled. I once went to an appointment with my younger brother to his local pediatrician and was shocked by how silent his doctor’s office was. In comparison to the medical environment I was used to it seemed frighteningly stiff and serious. I decided at that point that I never wanted to stop being a patient at Boston Children’s.
Because OI is generally diagnosed at birth, or during childhood years, it’s largely considered a pediatric condition. This is why many of the specialists I see are at Boston Children’s—they’re the medical professionals who best know what I’m going through, and how to treat it. But the world is changing and there are now many adults living with OI or other conditions usually associated with childhood. There are literally tens of thousands of patients who were diagnosed with these pediatric conditions that are now grown-ups, myself included. The fact that so many of us are living long and fruitful lives is a gift of modern medicine, but can also lead to difficulties when we need to change doctors.
Dr. Frederic Shapiro, has been my orthopedic doctor and go-to guy ever since birth. My family and I have tried many times to play the “guess how old Dr. Shapiro is?” game, but no one really knows. The point being, I dread that day when he tells me he is going to retire. It fills me with so many questions.
Who will I go to? Will I have to explain exactly how to hold my broken leg? Will I have to describe the right combination of pain medications to prescribe? Am I going to have to tell someone totally new about why I dislike wearing slings? Will Dr. Shapiro’s replacement be as flexible about how and when we communicate?
There is so much uncertainty it makes my head spin, and I hope I don’t need to find out the answers to these questions for a very long time.
I will miss the sounds, noise, colors and clowns of Boston Children’s. But I’m also coming to understand that part of being an adult means doing what’s right for you, even if it’s not the easiest option.
But as much as I love Dr. Shapiro and Boston Children’s, I can’t deny that there are parts of me that require adult health care at this point, and a few people on my care team have been kind enough to nudge me in that direction. “Sandy, you know, you’re not a child anymore. We would be happy to continue to see you, and we are not trying to push you out of the system, but if you need help in transitioning to an adult care setting we’d be happy to help.”
I appreciate their friendly nudging into the boring world of adult hospitals. When the time comes I will miss the sounds, noise, colors and clowns of Boston Children’s. But I’m also coming to understand that part of being an adult means doing what’s right for you, even if it’s not the easiest option. It’s recognizing for myself what it means to be an adult, inside and out.
I’ll get there eventually, hopefully sooner rather than later; I just wish I could take Dr. Shaprio with me.