A lot of people do not know exactly what Spina Bifida is. I didn’t really know either, and the fact that we were surprised at the birth of my son with this diagnosis, took a lot of googling to understand what was going on. I found the following with help through the CDC website.
What is Spina Bifida?
Spina Bifida is a condition where the neural tube does not close during pregnancy. It can happen anywhere along the spine. The backbone that protects the spinal cord does not form and close as it should and often results in damage to the spinal cord and nerves.
Types of Spina Bifida
There are three types of Spina Bifida.
Myelomeningocele: This is the most serious and common form of Spina Bifida where a fluid filled sac protrudes through the opening and contains part of the spinal cord and nerves. In most cases, a person sustains nerve damage that ranges from mild to severe, which include problems using the bathroom, loss of feeling in the legs or feet, and not being able to move the legs. In some cases, the pulling of the spinal cord causes a chairi malformation of the cerebellum and also hydrocephalus.
Meningocele: This type is where there is still a fluid filled sac that protrudes from the opening in the back, but the spinal cord is not in it. A person with Meiningocele Spina Bifida may still have some minor disabilities.
Spina Bifida Occulta: This is the mildest form of Spina Bifida and is sometimes called hidden Spina Bifida. There is still a small gap in the spine, but never an opening or sac present. Most often, this type of Spina Bifida is not discovered until later in childhood or adulthood. This type does not cause any disabilities.
In most cases, a baby is diagnosed in utero if the mother has testing done. The types of testing that can be done are, AFP (alpha-fetoprotein), ultrasounds and aminocentesis.
Sometimes, it is undetected until the baby is born. In our case, my AFP and amniocentesis came back clean and they never saw the defect on the ultrasounds or MRI. The only thing they saw was a abnormally shaped cerebellum.
Treatment for Spina Bifida will differ from person to person, almost like snowflakes, no two are alike.
Causes and Prevention
The cause of Spina Bifida is unknown. Studies are being done everyday to find out what may cause this defect. Some studies show that not enough folic acid during pregnancy may be a cause but that is still just a theory.
Living with Spina Bifida
People with Spina Bifida may have disabilities that range from mild to severe. Some people have a noticeable disability such as paralysis, while others may not have any. However, most people with Spina Bifida are able to live great lives.
Spina Bifida Resources
To learn more here are some helpful websites: