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. …
When I was pregnant and the ultrasound showed severe spina bifida and kyphosis (an excessive forward curve in his spine), the specialist told us he had never seen a spine like Phoenix’s. He wasn’t sure how it could be treated and recommended terminating my pregnancy.
My husband Mike and I chose not to.
Phoenix was born on June 29, 2009, with a lesion at the base of his spine. His spinal cord and nerves were exposed, so his first surgery was a skin graft to cover the lesion. On top of spina bifida and kyphosis, our son was diagnosed with clubfoot and hydrocephalus.
It felt like Phoenix was a patient before he was baby. He had 16 specialists — an orthopedic surgeon, neurosurgeon, ophthalmologist, physical therapist and more.
Phoenix’s appointments gobbled up 40 hours a week. One doctor would remind me to stretch his legs with every appointment change; another to patch his eye.
He didn’t get to be baby, and the back and forth among all of Phoenix’s specialists left me feeling insecure and unsettled as a mother. Was I doing anything right?
Doctor after doctor talked at me. Every visit was a constant checklist.
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.