WHO WE ARE
A Unique Few
We are parents just like you who love someone who was diagnosed with an encephalocele. We have spent many sleepless nights crying to God and asking, "why?" We have spent countless hours searching Dr. Google for an answer and finding none. With each doctor visit and internet search, the weight of the diagnosis got heavier and heavier. We just wanted one thing: Hope.
...Hope that our little one would be okay.
...Hope that the doctors would have some answer about an outcome other than death and disability.
...Hope that we would be able to handle it all.
We want to help provide some hope. This site has information on experienced facilities and doctors that have handled encephaloceles. It also contains testimonies from parents about their stories and their cele babies.
Our son, Thomas, is proof that God has the final say and miracles still happen.
WHAT IS AN ENCEPHALOCELE?
Here is basic information on encephaloceles. It comes directly from the Center for Disease Control and Prevention webpage.(https://www.cdc.gov/ncbddd/birthdefects/encephalocele.html#ref)
Encephalocele (pronounced en-sef-a-lo-seal)
is a rare type of birth defect of the neural tube that affects the brain.
What is Encephalocele?
Encephalocele is a rare type of birth defect of the neural tube that affects the brain. The neural tube is a narrow channel that folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord. Encephalocele is a sac-like protrusion or projection of the brain and the membranes that cover it through an opening in the skull. Encephalocele happens when the neural tube does not close completely during pregnancy. The result is an opening anywhere along the center of the skull from the nose to the back of the neck, but most often at the back of the head at the top of the head, or between the forehead and the nose.
Occurrence
CDC estimates that approximately 1 in 12,200 babies born in the United States each year will have encephalocele. This means that about 340 U.S. babies are born with this condition each year.
Causes
Although the exact cause of encephalocele is unknown, scientists believe that many factors are involved. There is a genetic (inherited) component to the condition, meaning it often occurs in families that have family members with other defects of the neuraltube: spina bifida and anencephaly. Some researchers also believe that certain environmental exposures before or during pregnancy might be causes, but more research is needed. CDC works with many other researchers to study factors that can
Increase the risk of having a baby with encephalocele, or
Impact the health outcomes of babies with encephalocele.
References
“Facts about Encephalocele | CDC.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, www.cdc.gov/ncbddd/birthdefects/encephalocele.html.