10/09/2025
This is the type Mason has. He has hydrocephalus, Chiari Malformation Type ll, polymicrogyria, neurogenic bowel, and neurogenic bladder. He used to have vesicoureteral reflux (VUR) which is urine backing up into his kidneys. He has low muscle tone and is delayed in every way. He's still an awesome little guy no matter what. The picture of his opening is in the comments.
It is Day 9 of Spina Bifida Awareness Month!
Today, let's dig into the most severe form of Spina Bifida, Myelomeningocele.
Myelomeningocele is the type of Spina Bifida most often associated with "Spina Bifida," which we are learning through these 31 Days of Awareness posts, is actually a broad spectrum.
In this "open" form, a sac containing both the spinal cord and nerves protrudes through the spinal opening. This causes nerve damage.
As we've already learned, everyone with Spina Bifida is impacted in different ways, but this type of Spina Bifida is associated with moderate to severe physical and intellectual challenges. There are also several secondary conditions commonly associated with this type of Spina Bifida, including neurogenic bowel/bladder, paralysis, reduced sensation, mobility limitations, differences in the brain caused by Hydrocephalus & Chiari II Malformation, tethered cord syndrome, and a latex allergy.
The location of the opening on the spine greatly impacts the severity of myelomeningocele.
We will often hear families say their child "has the mildest form of the most severe type of Spina Bifida."
As you can see, there are a lot of secondary conditions with this type of Spina Bifida, and we will learn more about those throughout the rest of Awareness Month.
