This web site is provided for persons with Schizencephaly and their parents, families, physicians, therapists,and friends.
Schizencephaly is a rare developmental disorder characterized by abnormal clefts, or slits,
in the brain's cerebral hemispheres. Persons with Schizencephaly may present with varying degrees of developmental delays, seizures, delayed speech and language skill, vision and eating disorders. Many have normal intelligence. They may also have microcephaly (abnormally small head), mental retardation, hemiparesis or quadriparesis (partial or complete paralysis)
and reduced muscle tone (hypotonicity). Some may have hydrocephalus.Schizencephaly occurs when there is a failure of the normal migration of neurons from the germinal matrix zone at 1-5 months of gestation. Some theories suggest that possible causes of this are in-utero stroke,early gestational viral infections,and sometimes a mutated gene called EMX-2. If the gene EMX-2 is missing or defective, nerve cell growth and migration will not occur normally and this will lead to the formation of the 'clefts' associated with Schizencephaly. Genetic problems include both those that run in families and those that have appeared for the first time in the child who is affected.
Often, a specific cause for Schizencephaly
cannot be found in a particular child.
How significantly your child may be affected
depends on where the cleft occurs in the brain,
whether it is unilateral or bilateral,
whether it is the open lip or closed lip type,
and whether it is associated with
other brain malformations.
* Unilateral means clefts in only one hemisphere of the brain.
Bilateral means clefts in both hemispheres of the brain.
* Closed lip, or Type I, has clefts with fused edges.
Open lip, or Type II, has clefts with separated edges.
Individuals with other forms of Schizencephaly
can fall anywhere in between these groups
in terms of how significantly they are affected.
Therefore, to get the best information
on how your own child will do,
it is important to discuss with your doctor
the specific characteristics of his or her Schizencephaly.
MRI (magnetic resonance imaging) is the best way to diagnose Schizencephaly.
The prognosis for individuals with Schizencephaly
varies depending on the size of the clefts
and the extent of neurological disabilities.
Your child may have the same chances
of a long and happy life as any other child.
Sometimes other medical issues caused by Schizencephaly
affect lifespan, but just having Schizencephaly doesn't mean
they are destined for a shorter life.
Click here for
More Information From
National Institute of Neurological Disorders
Schiz Kidz Buddies began in 1997 when four mothers, who had children with Schizencephaly,
met online, to gain support from each other.
Currently, we are approximately 1900+ families,
around the world, who communicate with each other
through our daily EMAIL LIST. The Email List is the "heart" of Schiz Kidz Buddies....
we ask questions, air frustrations,
share about our families and our children with Schizencephaly
and in doing so,
gain invaluable support
from others who "have been there".
Click To Join Schiz Kidz Buddies
You MUST give your Name,
State and Country when subscribing
God bless you!
Judi Wright Lynn Niedzwiecki
Co-Founders/Moderators Mother of twenty, including Mother of Schiz Kid Schiz Kid Dolly, age 20 Danika, age 13
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