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Ciannah's Story

"You have to work with your kids. And keep fighting. Because they’re fighting, too."

Ciannah

When she was just an infant, Cianah suffered a severe stroke that rendered her paralyzed on one side of her body. When she had another stroke, her parents brought her to NewYork-Presbyterian Komansky Children’s Hospital. She was ultimately diagnosed with Moyamoya disease, a very rare vascular disorder in which the arteries of the brain slowly shrink, compromising the flow of blood. If untreated, Cianah would suffer repeated strokes.

Cianah benefited from the collaboration between the adult vascular and neurosurgery programs specializing in stroke at NewYork-Presbyterian/Weill Cornell Medical Center. Crucial to her care were her interventional neuroradiologists, pediatric intensivists, pediatric neurologists, and pediatric neurosurgeons from NewYork-Presbyterian, as well as her hematologist at NewYork-Presbyterian Brooklyn Methodist Hospital, all working closely together to develop a plan for her treatment.

Dr. Mark M. Souweidane and his team performed a neurosurgical procedure in which they move an artery of the scalp through an opening in the skull and place it onto the surface of the brain. Over time, the brain begins to "recruit" branches from this donor artery to provide more normal blood flow and prevent further strokes.

Cianah has had no more strokes and is doing beautifully. She loves to dance and read The Cat in the Hat. Her only memory of the hospital is the playroom, “full of every kind of toy,” she says. “I can't even name them!”

About Moyamoya Disease

Moyamoya is a rare, progressive vascular disease that affects the carotid arteries — the major blood vessels in the brain. Due to a blockage, the brain gets starved for oxygen and then recruits other sources of blood from vessels nearby. This is usually enough for the brain until it is put under stress by things like exercise, fever, dehydration, or illness. At this time, most children will complain of loss of vision or weakness due to a transient ischemic attack (often called a mini-stroke, where the blood flow to a part of the brain stops for a short time and the stroke symptoms usually last less than 24 hours and then disappear). A full-blown stroke is less frequent but the recovery is not full. And since it's a progressive disease, the symptoms continue to get worse, and a child's chances of suffering a stroke become much greater.

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