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.
“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.’”
A rare disease and an answer
Panicked, Kristen brought Carolyn to an emergency room near the family’s home in Greenland, New Hampshire. Carolyn had a CT, MRI of her head and neck and an electroencephalogram (EEG, which measures her brain’s electrical activities). The tests ruled out a brain tumor and a large stroke, but there was no clear diagnosis.
Kristen and her husband Jeff gathered Carolyn’s medical records and brought their daughter to the Boston Children’s Emergency Department two days later.
“We decided we needed to go to Boston Children’s where they see children with rare disorders every day,” says Kristen.
At Boston Children’s, Carolyn’s doctors determined her symptoms were stable and recommended further testing, including an additional MRI as well as a lumbar puncture. Anxious for answers, the Milks told the schedulers they would take Carolyn to the first available appointment.
On April 1, an appointment opened up at Boston Children’s in Waltham. “A neurologist called us before we even got home and told me Carolyn had to be admitted,” says Kristen. The scan showed cerebral tissue had been deprived of blood flow, and her internal carotid arteries had narrowed.
“I had no idea what could be wrong with a seven-year-old’s arteries, but I knew she was in trouble,” says Kristen.
Carolyn’s team of specialists began to narrow in on a diagnosis. Dr. Jamie Heath, a neurohospitalist, and her resident met with Kristen.
“I told the rounding team I wasn’t able to process all of the information; I was overwhelmed and afraid. My husband was taking care of our other daughters, and I was staying with Carolyn alone. Dr. Heath told me she and her resident would come back later and sit down and talk. And they did. They sat with me and took extra time to review the treatment plan and what could be done for Carolyn with each scenario. I took my first deep breath in 24 hours.”
Later, Smith visited the Milks and discussed the very likely diagnosis of Moyamoya disease, a rare progressive neurovascular disease. The carotid arteries narrow, slowing blood flow to the brain. Without treatment, a child’s risk of stroke can reach 90 percent. Carolyn’s initial treatment plan was simple. A daily baby aspirin and adequate hydration could slow the progression of the disease. Because Carolyn’s symptoms were stable, she was discharged.
Ten days later a cerebral angiogram confirmed the diagnosis. Carolyn had Moyamoya. The angiogram showed strokes on the left side of her brain, and her narrowed arteries had decreased blood flow to her left arm and leg.
Watching, waiting and surgery for Moyamoya disease
As the Milks watched and waited, Smith recommended Carolyn have a normal spring. Because most of her symptoms disappeared with treatment, Carolyn did just that. She scored 15 goals in her first season in lacrosse, rode her bike and played with her sisters.
Smith kept an eye on Carolyn, watching to see how the disease progressed through a follow-up MRI and then scheduling her surgeries.
On June 28, Smith performed the surgery on each side of Carolyn’s head.
She was discharged, with limitations to her physical activity, three days after surgery. It was difficult for Jeff and Kristen to keep their daughter from doing the things that she loved because Carolyn looked normal and felt good.
“They did a great job with her hair. It has made a huge difference in her recovery in how she looks and feels,” says Kristen. Carolyn’s head was shaved in a 2- X 6-inch line from just in front of the top of each ear to the crown of her head on both sides. Her scars are barely visible behind the hair that remains.
The entire family returned to Boston Children’s on August 11, anxious to see what the next few months would bring. “Dr. Smith said no water skiing at least for this year but yes to swimming, easy water tubing, riding her bicycle and playing soccer in a couple of weeks,” says Kristen.
Carolyn will return to Boston Children’s for a follow-up MRI every six months and a cerebral angiogram in 12 months to make sure the graft has formed new vasculature.
It’s the new normal and a great cause for celebration for the Milks family.
Learn more about the Boston Children’s Cerebrovascular Surgery and Interventions Center.