Stories about: Cerebrovascular Surgery and Interventions Center

Hope for Leonce: Kenyan boy’s incredible journey with vein of Galen malformation

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Boston is a long flight from Kenya — 22 hours long, in fact. That’s enough time to sleep, eat, read, watch countless YouTube videos and do it all over again, an experience that could make adults antsy, let alone two little boys. Yet it was a journey that Jane Nduta and Humphrey Njogu were eager to make.

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On the move: Lilith’s dramatic recovery from arteriovenous fistula

recovering from arteriovenous fistula , playing in the snow

It began like any typical late summer day. Lilith Borden and her mom, Victoria, had stopped by a farm near their Concord, New Hampshire, home where the 3-year-old could enjoy an ice cream cone — and burn off some energy playing in a nearby field.

“We were running through the grass, when Lilith suddenly grabbed the back of her neck and screamed that she had a boo-boo,” Victoria remembers. Within seconds, she seemed to have trouble moving. As Victoria called for help, the little girl collapsed to the ground.

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Father and son find unexpected connection

cavernous malformationMatty Siegrist and his dad Tim share the same thick brown hair and ready smile. They also share a trait that’s not so visible — a mutation in the CCM3 gene that causes cavernous malformations, abnormal blood vessels that form in the brain and spinal cord. When these blood vessels leak, they can cause seizures, headaches and a host of other problems.

A lively and high-spirited 2-year-old, it’s hard to believe Matty recently had brain surgery or that before the surgery he was struggling to walk because his balance was so poor. Matty’s surgery, performed by neurosurgeon Dr. Edward Smith, of the Boston Children’s Hospital Cerebrovascular Surgery and Interventions Center, had removed one of the larger malformations from his brain.

Tim also had brain surgery as a child, but at that time his doctors didn’t fully understand his condition or realize it was genetic. Tim rarely thought about it again until Matty started having strange symptoms, at around 13 months.

“He had been saying a few words, and then he just stopped,” says Matty’s mom, Jessie. “Then he started sleeping a lot. His doctor tested his thyroid and ran a couple of other tests, but they couldn’t find anything wrong.”

Concerned about these symptoms, Matty’s pediatrician recommended they see a neurologist near their home in Connecticut. The neurologist ordered an MRI and diagnosed the cavernous malformations, but she assured them that they often remained stable and didn’t require treatment.

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

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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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