Our identical twin boys were diagnosed with enlarged lateral ventricles around 23 weeks gestation. The next few weeks were hard, and involved a lot of worry. Around 29 weeks, we first heard the term “Lissencephaly”.
Lissencephaly, which literally means “smooth brain,” is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly). Lissencephaly is caused by defective neuronal migration during embryonic development, the process in which nerve cells move from their place of origin to their permanent location within the cerebral cortex gray matter. Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation.
The exact genetic mutation that caused their Lissencephaly is still unknown. So more than anything, we are learning about them FROM them, as they continue to amaze and inspire us each day. Their lives are precious, so we’re soaking up every single second. And I’m documenting their journey here.