In a lot of ways, I’m like any 13-year-old: I like to FaceTime with my friends, play with my younger brother Ethan and our three dogs and post selfies on Instagram. I also play clarinet and love to sew, knit, quilt and make other crafts. But I’m different, too — and I want other kids to know that it’s okay to be different.
I was born with spinal dysgenesis, which means that one of my vertebrae was out of place and pinching my spinal cord. As a result of the surgery to fix it, I have a problem called post-operative paraplegia — I can’t move my legs when I want to. I use a wheelchair to get around most of the time. I think of the chair as being part of me, but it doesn’t define me. …
This spring, Joao DeToledo will be stepping onto the volleyball court to play for his high school team for the first time. It will be a proud moment for the high school senior from Somerville — playing a competitive sport is a goal he hadn’t dreamt possible just a few years ago. Though Joao has always loved sports, he was born with Ebstein’s anomaly, a congenital heart condition that, until recently, has forced him to spend a lot of time on the sidelines.
When Joao expressed frustration at not being able to participate in gym and sports as much as he’d like, his cardiologist, Dr. David Fulton, recommended the Cardiac Fitness Program at Boston Children’s Hospital. The program, one of the first of its kind, offers kids and adults with congenital heart disease a chance to exercise in a safe environment. …
Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.
But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.
Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).
Though she’s never gotten really sick, Diba is a complex patient. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.
Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”
Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”
Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)
Even measuring Diba’s head circumference can be a challenge.
One year after that surgery, Abby’s orthopedic surgeon Dr. John Emans, director of the Boston Children’s Spinal Program, prescribed a brace to treat her scoliosis. However, despite everyone’s best efforts, Abby’s scoliosis progressed as she grew, and her curve reached 65 degrees by age 11.
That’s when Emans suggested a new option — MAGEC surgery. Remote-controlled magnetic rods are surgically implanted into the spine and periodically lengthened to treat early-onset scoliosis. Abby was the first at Boston Children’s to receive this surgery, which reduced her curve from 65 to 10 degrees.
That was two years ago.