What is Lissencephaly?Lissencephaly is a rare brain malformation that leaves part of the brain smooth when it should have folds or gyri. Lissencephaly (meaning smooth brain) occurs when there is a defective migration of neurons while the brain is forming. It generally takes place in the womb between the 12th and 24th week of gestation.
How is it diagnosed?Lissencephaly (if severe enough) can actually be seen via ultrasound while the baby is still in the womb. If it is a milder case, the proper diagnostic tools include a MRI with or without contrast or a CT scan (Lola’s did not show up on a CT scan).
Are there different variations of the condition?There are many different degrees of lissencephaly. The entire brain can be smooth making it a complete lissencephaly case or just specific areas of the brain can be affected making it isolated.
How is it treated?There is no cure for lissencephaly because it is a malformation of the actual brain itself. Anti-seizure medication may be needed to help control seizures as this is often a symptom of lissencephaly. But constantly challenging the brain (via therapy) to help it to form new neuropathways is the greatest type of treatment you can offer to a child with lissencephaly.
What is the prognosis?Each individual case is different which makes giving a prognosis difficult. It also depends on where the lissencephaly takes place. While others can see perfect, but they lack other skills such as memory, the ability to speak or other fine motor skills because the lissencephaly occurs in the frontal lobes.
. Physical, occupational, speech and behavioral therapy are all implemented to help a child reach their maximum potential. No two cases are alike therefore a specific prognosis is never attainable.
Links we found helpful:
Lissencephaly Launch Pad
Again, the information on lissencephaly is quite sad. You never imagine your kid will be the 1 in 85,470 to have this condition, but it can happen. So rather than wallowing in sorrow as you read the detrimental news online, follow the journey of the child who has been affected. My initial response was extreme sadness (in which it is normal to grieve), but now I am embracing this condition because Lola is still Lola. She will not be defined by West Syndrome or lissencephaly. She our daughter. She is an individual human being. She is writing her own definition of what these conditions are and how they affect her. She will not be that textbook case which is why we stay away from reading too much information on the internet.