Spina Bifida Occulta: Part II

Spina Bifida Occulta (SPO) is considered the least detrimental of the Spina bifida disorders, and is estimated to affect 10-20% of the population, so clearly many people have the disorder and do not know. The children from China or other countries who have no symptoms would not be classified as having special needs. However, there are types of SPO that do have symptoms.

These are the main categories of Spina Bifida Occulta

• Thickened filum terminal: The spinal cord is too thick.
• Fatty filum terminale: There is fatty tissue at end of the spinal cord.
• Diastematomyelia (split spinal cord) and diplomyelia: The spinal cord is split in two and this split is often caused by a piece of bone.
• Dermal sinus tract: The spinal cord and the skin on the back are connected by what looks like a band of tissue.
• Tethered spinal cord in which the end of spinal cord is attached in the wrong way and, therefore, becomes stretched
• Dipomyelomeningocele and lipomeningocele where the spinal cord is attached to a fatty tumor [1]

When children do have symptoms, they may experience some neurological problems such as numbness or weakness in the legs or back. Other children may have deformity in the legs, feet, or back, with foot deformity being the most common. Then as the child matures, the caretakers will notice problems with bladder or bowel control. The problems can be as obvious as no bladder control or can be more subtle, such as having increased urgency and frequency to urinate. An SBO may not be detected until the child is closer to two years old, as this is when the child’s lack of ability to walk and have bladder control would be noticed.

Most children (80%) with SBO will have some noticeable visual irregularity on their backs, which may include:

• A hairy patch
• A fatty lump
• A hemangioma, which is a birth mark that is usually red or purple
• A dimple in the skin
• A lighter colored area[2]

To see pictures of these markings on the back, go to: Medscape.com (You will have to sign up to be a free member of MedScape. The articles presented are beyond the basics, but are written for the lay person.)

Because Spina Bifida can produce a far range of symptoms, which are often not known in a very young child, an MRI can be done to determine the extent of a the condition. If a child is in a rural area in China, most likely the child will need to be brought into a larger city to have an MRI.

Although SBO can be serious, treatment can be successful for these children. In one study in which those who had a spinal cord untethered through surgery (the average age was 7 years old), the surgery produced positive results. Before the surgery 84% had some neurological problems, about 77% had urological problems, and nearly 39% had some limb deformity. After the surgery, all the subjects either stabilized or improved, and more than 45% had all symptoms resolved. The likelihood of success after surgery was based on the person’s age—the younger the age at surgery, the better the outcome.  Children under 2-years-old had the best post-operative prognosis. [3] However, in another study, of children ages 3 days to 16 years old with SPO whose cords were also untethered through surgery, one-third of the children continued to have symptoms and some even developed more neurological problems. [4]

Many children with SBO are available for adoption through China's Shared List.  If you are interested in such a child, please contact Lisa@nightlight.org

Once you are referred a child with SBO, you will want to get as much detailed information as possible and have a specialist review the child’s records. Although an outcome is not always predictable, based on your child’s condition, the location of the SBO on the back, and the child’s age, the health care provider can provide some realistic outcome for the child. Many of these children can lead fully productive lives.