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.
Listen to Colton and Lena talk about their relationship.
My little sister, Lena, was born in Denver, Colorado, on Feb. 24, 2000. My recollection of that day and the weeks that followed is hazy — not only because I was just six years old, but also because I was being shuttled between several relatives while my parents attended to some “medical problem” my sister had, which I couldn’t really understand.
The words spina bifida didn’t mean much to me, but between my parents’ solemnity and the fact that — as it was explained to me — the doctors needed to cut into my sister’s back with a laser, I started to get an abstract, naive idea of the seriousness of the whole thing.
Sierra Yoder was having a normal pregnancy, but the 20-week prenatal ultrasound seemed to tell another story. The Yoders learned that their child — a boy to be named Bentley — had something called an encephalocele. Brain tissue was bulging out of an abnormal opening in his skull, unprotected by bone.
“They said he had zero chance of survival — ‘incompatible with life,’ they told us,” recalls Sierra. “I specifically remember asking is there any chance he could survive? They said no, that in the best-case scenario, he’s going to be a vegetable. They made it out like I was going to lose him at any point.”
With that knowledge, the Yoders decided to end the pregnancy. But at the 11th hour, Sierra changed her mind. It didn’t feel right — Bentley was moving and kicking and had a strong heartbeat.
So they kept going. …
“I remember the phone call after Lauren’s fall,” says Dr. Jordan Busch. “My wife said, ‘Lauren fell, and her vertebra is broken, but that’s not the bad news.’” A tumor had eaten away at one of the bones in Lauren’s neck and was lodged in their daughter’s cervical spine.
“I can still see the slow-motion tape in my head,” recalls Dr. Nancy Corliss, Lauren’s mother. “It looked like a routine soccer trip, and I did the three-second count every mother does.”
Nancy started running when she got to three. Lauren, then 12, and a star forward for a JBSC U12 team, was strapped onto a backboard and rushed to Morton Hospital in Taunton, Massachusetts.
This type of tumor is one in 250,000. To find any surgeon with the right experience and expertise is one thing, and to find a pair who had more experience than anyone else was incredibly fortunate. ~ Dr. Jordan Busch
After Lauren’s CT scan showed a tumor in her spine, her emergency physician told Jordan and Nancy, “Boston Children’s Hospital is the best place for your daughter.”
Lauren endured a second painful ambulance ride to Boston Children’s and then an MRI scan, which confirmed the tumor.
As her parents and doctors conferred, Lauren formed her goal — returning to the soccer field. She told her mother she needed a replacement for her lucky #28 soccer jersey. (Her jersey had to be cut off after the injury.)
Though Nancy gently explained the jersey wasn’t the top concern, Lauren remained adamant. After Nancy texted Lauren’s coach James Bede with an update on her condition, he had a new jersey made and delivered it to Lauren.
“I knew he believed in me,” says Lauren.