Author: Joyce Choi

After Moyamoya surgery, a back-to-normal birthday for Carolyn

moyamoya-surgery
Before Moyamoya surgery

Carolyn Milks turns 8 on August 21. It’s a big celebration. Carolyn and her family aren’t just celebrating her birthday — they’re celebrating Carolyn’s return to normal. For most of the summer, things like swimming, riding her bicycle and horsing around with her sisters and cousins had been out of the question for Carolyn.

But on August 11, Dr. Ed Smith, co-director of the Boston Children’s Hospital Cerebrovascular Surgery and Interventions Center, gave Carolyn the green light. She could go back to being a kid.

“This is what kids really want. They just want to be normal and do their normal activities,” says Carolyn’s mother Kristen.

It had been a topsy-turvy spring for the Milks family.

My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’

Carolyn, normally a bright, active second grader, started having puzzling symptoms in March.

“She was having a hard time concentrating on her homework and was crying, and my husband and I couldn’t figure out why,” recalls Kristen.

Over the next few days Kristen, an occupational therapist, began observing strange movements in her daughter’s left arm and hand. Carolyn appeared to struggle with everyday activities like holding a pencil, tying her shoes, and she even tried to switch her hand dominance. Kristen set up her phone to video Carolyn.

At the end of the week, while Carolyn, her twin sister Laura and their big sister Emma, were playing at a trampoline park, Kristen watched the videos.

“I was becoming alarmed at what I saw with the functioning in her left arm and hand. Later that day, I watched Carolyn almost fall doing a back bend. Her left arm didn’t hold her weight. And then when I watched her walk, she almost fell a couple of times; she didn’t have full control of her left leg. My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’”

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Catching up with Abby

scoliosisWhen you look Abby DiCocco, a 13-year-old from Clifton Park, N.Y, it’s hard to believe that the rising eighth grader, avid swimmer and budding triathlete ever had any problems with her spine.

Abby was diagnosed with scoliosis when she was in first grade and had surgery to remove a Chiari malformation, an abnormal meeting between the brain and spinal cord, at Boston Children’s Hospital.

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.

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