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.