What is schizencephaly? I get asked this all of the time because it is something Sean has. There is not much out there of what it is, why it happens, and everywhere I read it says that it is rare.
Here is the national institute of Neurological Disorders and Strokes definition:
Schizencephaly is an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain. Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence. Individuals with schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus.
My definition is of what Sean has is called closed lip schizencephaly. Basically he has an area of his brain that is not connected. The best way to describe it so everyone who understand is that he has a whole in his brain. The neurologist thinks because of the closed lip schizencephaly which means Sean's brain did not develop correctly during brain development may have been the reason Sean suffered chronic ischemic strokes while in utero.
Sean is suffering seizures he is having complex partial seizures and is currently on medication and the closed lip schizencephaly is affecting not only the parietal lobe where the stroke happened but the frontal lobe, and the temporal lobe too. He also has poor muscle tone, and goes to tons of therapy.