This is going to be the semi-short version. Maybe… There are more links at the bottom of this page to resources on the web if you want more information.

Spina Bifida is a neural tube defect that occurs when the spinal column of the baby fails to close during the early days of the pregnancy (usually by 28 days post-conception). The spinal cord and nerves squeeze through this opening and protrude into a sac on the baby’s back (although there are varying degrees of this protrusion). Colten’s sac is 10cm (about 4″).

The medical community doesn’t know what exactly causes spina bifida. Often, it is stated that a deficiency in folic acid plays a role, however, even with enough folic acid, spina bifida can still occur. Genetics and environment most likely are factors, but specifics are unknown.

Due to the weight of the sac pulling on the spinal cord, some children may develop hydrocephalus (“water of the brain”) and require a shunt to drain the excess cerebral spinal fluid. We won’t know if this is the case with Colten until after birth and probably even after surgery. The ultrasound was promising in that it didn’t appear he had extra fluid in his brain area.

The location of the sac on the spine can determine, to an extent, the amount of damage. The lower on the spine the better the prognosis (Colten’s appeared to be on the bottom-most portion, the sacral area). The higher up, the more bodily functions/abilities are impacted. There is often some degree of lower extremity paralysis or lack of skin sensation, and most children with Spina Bifida have issues with bowel and bladder control.

Because of how we develop as humans throughout infancy, toddlerhood and beyond, there will be many unanswered questions along the way. We may not know the full extent of damage until we get to a certain stage (ex: crawling or walking).

A neurosurgeon will operate on Colten 1-2 days after birth to remove the sac and close up the spinal cord. There is currently no surgery or treatment to repair nerve damage; all we can do is work on overcoming any obstacles that arise due to nerve damage.

There are different types of Spina Bifida. We do not yet know what type Colten has, although it has been narrowed down to one of the first two listed below:

• Myelomeningocele: requires surgery; bones of spinal cord do not come together and there is no skin covering the open cord; the cord is protruding through the open bones and skin
• Meningocele: requires surgery; the meninges, or protective coverings of the spinal cord come through the opening on the child’s back (the cord itself does not); less chance of nerve damage but problems can develop later in life
• Lipomeningocele: fatty tissue collects near the spine, but no open sac – rather a bulge or dimple on the back
• Occulta: no opening or nerve damage, but a small defect or gap in a few of the small vertebrae, or spinal bones; most people don’t even know they have it although problems can arise later in life