Explanation of Baby A's Spinal Defect

As Ryan referenced in the first post, our sweet Baby A has what is called a closed spinal defect, or Spina Bifida Occulta. To put this into perspective, there are three types of Spina Bifida that occur. 


Spina Bifida Occulta, often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back (skin is "closed"). In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.


There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood. In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. 


Spina Bifida Meningocele is when the protective coatings (meninges) come through the open part of the spine like a sac that is pushed out (a bulge, but the skin is still intact). Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.


Spina Bifida Myelomeningocele occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities. 




At this point, all symptoms that we can see right now, while still in utero, point to Spina Bifida Occulta. He will be evaluated upon birth, and they will ultrasound his back so that they might see more detail than they can right now. The neonatologists will also watch for him to be able to move his legs and look for any other symptoms that would make them want to investigate further for surgery sooner rather than later. There is nothing that can tell us at this point if he will need surgery, and if so, at what point (whether its soon after birth, or 6 months down the road). 


It is never easy to hear that there is something wrong with your child, no matter the severity. We are thankful that we've been having serial routine ultrasounds, and that is how this was found. It has helped us prepare for what lies ahead, pray for each of our baby's health, and set our expectations. We have fully put each child into the hands of God, and trust that He will take care of them, and provide us with what we need and sustain us through what lies ahead. 


Hopefully this provides a better understanding of what is going on with the spinal defect for Baby A. 


Thanks again for your continued support, prayers, emails and everything else. We both appreciate it and feel the support around us!  



*All Spina Bifida information is from www.sbaa.org