An encephalocele is a rare neural tube defect. Early in fetal development, the neural tube, which forms the brain and spinal column, fails to close all the way. When this failure to close happens toward the top of the neural tube, an encepahalocele occurs. A hole is left in the skull, and the brain herniates through it.
Encepahloceles occur all over the world and in every ethnicity. They can be located on the front, or the back of the skull. They can range in severity from a small defect that is easily operated on, to very severe defects that make it impossible to survive.
Encephalocele is a scary diagnosis, but thanks to modern medicine, more and more babies are surviving. Please, if you have been given this diagnosis and need another parent to connect with, feel free to contact me, via the link in the sidebar.
Read my son Liam's story of survival, Here.
If your baby has an encephalocele, and you are looking for support, please see our group on Facebook, Encephalocele Mommies and Daddies.
To read more about Encephalocele, check out these websites:
Facts About Encephalocele
Band Back Together: Encephalocele Resources
National Organization for Rare Disorders: Encephalocele
Let me know of any other websites you think I should include here.