Better Health and Wellness: Newton toddler thriving with rare blood vessel disorder

Better Health & Wellness

NEWTON, Kan. (KSNW) — Being far from home while your child has a medical emergency sounds like a nightmare to most, but Newton parents Tanner and Taylor Lewis consider it a “godsend” in hindsight.

The couple was vacationing in Colorado with their 4-month-old son Harrison. While their family hit the ski slopes, the pair were back at the condo and noticed Harrison’s arm twitching.

Courtesy: Lewis family

Out of caution, they called their pediatrician back in Kansas and were told to keep an eye on Harrison and to call back if his condition worsened. It did.

An ambulance took Harrison to Denver, where doctors informed Tanner and Taylor their baby had a pretty major stroke. A pediatric neurologist suspected Harrison had a rare condition called moyamoya, where blood vessels that supply blood to the brain become narrowed, limiting blood flow to the brain and putting patients at risk for stroke.

“The amazing thing is, a lot of medical professionals around here didn’t know what moyamoya was. The fact that we were in Colorado when it happened, was a godsend,” Tanner said.

Harrison needed surgery to reroute blood flow to his brain. Surgeons would operate on a vein that is as thin as a piece of hair. Harrison would go on to have surgery at 11 months old.

Courtesy: Lewis family

“They remove part of his skull, and then laid this blood vessel down that was laying on the outside, laid it down on top of his brain and then put the skull piece on. And it just naturally started creating more bloodflow,” Taylor said.

The family returns to Children’s Mercy Kansas City every year to monitor Harrison’s carotid artery, though all his MRIs so far have been “great.” In addition, the three year old takes a quarter of a baby aspirin every day to prevent clotting.

Physical therapy, specifically in his arms and fingers, ensures his motor skills don’t suffer.

According to Mayo Clinic, moyamoya disease may occur at any age. However, symptoms most commonly occur between 5 and 10 years of age in children and between 30 and 50 years of age in adults.

CT perfusion scans show areas of the brain that have decreased blood flow (red arrows) caused by moyamoya disease. (Courtesy: Mayfield Clinic)

With Harrison being a baby for his first stroke, the classic signs (facial drooping, arm weakness, speech difficulties) did not apply. Taylor and Tanner now watch their son for signs of lethargy or seizure.

Having a child with a rare disorder often means parents advocating for their child’s needs. A doctor in Houston told the couple that even some first-responders are not trained in pediatric stroke. Should they determine Harrison needs an ambulance, the decision may be questioned.

“We would push and say, ‘No, he has a history, this is what’s happening,'” Taylor explains.

Tanner recalls a pivotal conversation with a doctor after Harrison’s stroke in Colorado:

“The thing he said was, ‘Harrison had a pretty major stroke. So what that means is, he’s going to be different than he would have been had he not had a stroke.’ That hit me so hard. But he is such a sweet kid. He’s funny. He’s a good brother. And I’m glad he’s different. I wouldn’t want him normal,” Tanner said.

Moyamoya is more common in Asian countries like China, Japan and Korea. “Moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage, according to the National Institutes of Health.

Harrison’s little sister Annie is overcoming her own obstacles with spina bifida. Watch for her story later this year.

Courtesy of American Heart Association and International Alliance for Pediatric Stroke

Resources:

American Heart Association – stroke in children

More about moyamoya

Moyamoya clinical trials

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