It’s the last day of Justin Doo’s research internship in the Department of Neurology at Boston Children’s Hospital and he’s eager to join the team for a celebratory scoop of ice cream at JP Licks. Before he leaves, he meets with his supervisor, Dr. Laura Lehman — but they both know this isn’t a final goodbye. The 18-year-old will see Dr. Lehman again within the year, because he isn’t just her intern. He’s also her patient.
Unlike most summer interns, Justin has already spent plenty of time at Boston Children’s — more than a decade, in fact. When he was 7 years old, his parents brought him to the hospital for an evaluation of his frequent headaches. But a magnetic resonance imaging (MRI) scan revealed that what everyone believed to be migraines were actually symptoms of a rare but serious cerebrovascular condition called moyamoya disease. “I didn’t really understand what was going on at the time,” remembers Justin. “I just knew that my parents were crying.” …
It’s been said that not all heroes wear capes — but Joey Gallagher owns several. The five-year-old has already amassed a collection of superhero gear, from a Superman Halloween costume to a t-shirt emblazoned with the Batman logo. Yet even the most diehard comic book fan would likely admit that feats like flying, leaping tall buildings and fighting bad guys don’t hold a candle to the challenges this little boy has already surmounted.
Just last June, Joey was out of town with his family when he had what his parents, Leila and Scott, feared was a seizure. Clinicians in the emergency department dismissed the event as heat exhaustion in the athletic, seemingly healthy boy. But it wasn’t long before he experienced another, full-blown, seizure during a tee-ball game back home in Kansas City. …
“I heard a noise and went in and saw him in a full-blown tonic-clonic seizure,” says his mother, Amy. Paramedics brought him to the hospital. Any further seizures could mean trouble, they told the Stedmans. “They said, basically, ‘you’re allowed one seizure in your life,’” Amy recalls.
A few months later, on an August evening around 10 p.m., Adam spoke with his girlfriend on the phone. She later told Amy, “Go check on him—he sounds kind of out of it.” That turned out to be a second seizure.
The third seizure, the worst yet, happened on Nov. 11. Adam had the day off from school, and his girlfriend was visiting. The family was eating dinner when the seizure started. It lasted nearly five minutes, and Adam was turning blue. Another seizure followed within weeks. The local hospital in Connecticut did an MRI, and the Stedmans received a call: “Can you come in before the office opens?”
Adam had an arteriovenous malformation, or AVM, a tangle of abnormally connected arteries and veins. Through a recommendation, the Stedmans met five days later with Dr. Edward Smith, a neurosurgeon in Boston Children’s Hospital’s Cerebrovascular Surgery and Interventions Center.
Because the AVM was in the visual processing area of his brain, Adam faced a risk of serious vision loss if the AVM wasn’t removed soon. It could bleed or burst at any time.
Catch up on what you may have missed on Thriving last month. Our staff takes a look back at a few of this month’s favorite posts.
A mother’s intuition—and a fall down the stairs—save a little girl’s life
Liz Beaulieu is likely the only person in the world who can say she saved her child by falling down the stairs.
Her daughter, Arielle, was just 4 days old. Liz was carrying her downstairs when she slipped. Not sure whether Arielle had hit her head, she whisked her to her local ER.
“She seemed fine, and they said that she looked fine,” Liz says. Still concerned, though, Liz kept a close eye on Arielle over the next couple of days. That’s when she noticed something.
“I noticed the slightest flicker of her eyes,” Liz recalls, “and decided that I wanted to get it checked out.” She took Arielle back to the hospital, asking them to do a CT scan. The hospital demurred, but Liz insisted, telling them she needed the peace of mind.
“So they did the scan,” Liz recalls, “and they found an enormous tumor.”
Read about Arielle and her family.
Kyle Cooper waits 18 years for oral surgery
Kyle Cooper was born with hemifacial microsomia (HFM), a craniofacial anomaly that resulted in the left side of his face being underdeveloped. It meant his face was noticeably uneven and barely any of his teeth touched. “I made it through and got used to it, but I couldn’t eat things like meat because it would take me three hours to chew.”
In February, Boston Children’s Hospital Oral Surgeon-in-Chief Dr. Bonnie Padwa reconstructed the 18-year-old’s upper and lower jaws and his chin. He returned to school just in time for prom and graduation.
Learn more about Kyle.
My life after concussion: Finding a new game
Fifteen-year-old Esther Lovett’s life turned upside down after she suffered a concussion. An excellent student and star athlete, Esther was seriously challenged by the prolonged affects of her concussion.
Read Esther’s words of wisdom for other teens.
For baby Joy, music and medicine are in perfect harmony
James Danna enters the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU) with the tools he’ll use to treat Joy, a 9-month-old patient recovering from open-heart surgery. Instead of a stethoscope or scalpel, James carries only small percussion instruments and a guitar.
He gently opens the door to Joy’s room, taking a quick read of her heart rate—138. Joy is a tiny little thing in a great big bed, under bright lights and tethered to multiple machines. Over the course of her multiple procedures for a congenital heart defect, the noise of the monitors, air conditioning and loudspeakers have made for a very wary baby. Her medical chart describes Joy as “staff phobic,” as most adults who enter her room poke and prick her.
But Joy has met James many times before and knows him to be safe. She locks her eyes on him and waits for the music to begin. Keeping his distance, James quietly hums a tune while strumming a few chords on his guitar.
Joy smiles, crosses her little legs and nods to the beat.
Listen to James and Joy.
Tyler’s story: 20 surgeries with a smile
Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”
For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.
Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude.