Spina Bifida: Part I

Welcome to the first in a 6-part series on Spina Bifida. In the following posts we will discuss each of the types of Spina Bifida (SB); making the decision to adopt a child with SB; and the treatment and prognosis for these children.

SB is a condition that occurs during the first month of fetal development in which the bones on the child’s back, called the vertebrae, do not fully enclose over the spinal cord.  It can be very mild and never noticed or it can be very severe, causing a child to have paraplegia or quadriplegia. It is a neural tube defect, and here in the US, with more women taking folic acid before conceiving and during pregnancy, the incidence of SB has decreased significantly.

In the US, the condition is most common among Whites  and least common among Asians. However, in China  there are reportedly 200 infants born with SB for every 10,000 births (see footnote); in the US, the incidence is 5-10 for every 10,000 births.  Certainly, SB is represented among the more than one million Chinese children born each year with special needs.

There may be a genetic component to SB as well as environmental factors that contribute to the condition.

There are three main types of this condition:

1. Spina Bifida Occulta (hidden) is the least severe type and usually goes unnoticed. In fact, this may occur in 10-20% of the population. Some symptoms can include a tuft of hair on the back, a cyst, or a hemangioma on the area where there was incomplete fusion of the bones. Some of these children may later develop some neurological problems.

2. Babies born with a meningocele have a fluid-filled sac visible on the back. The sac is often covered by a thin layer  of skin and can be as small as a grape or as large as a grapefruit.

3. The most severe form is myelomeningocele in which there is a sac-like mass that bulges from the back, and a layer of skin may not cover it. In some cases, the nerves of the spinal cord may be exposed.

Where the SB  is located on the back (upper vs. lower)  can also  impact the child’s ability to be mobile and have full bladder and bowel function. If the SB is located on the upper back (thoracic), the child can be affected from that point down, and these children most likely cannot walk without assistance.  If the SB is on the lumbar, the child’s nerves can be affected from the lower torso down and this can affect bladder control.  If on the lowest area--the sacral--then the child may be able to walk and have bladder control.

Depending upon the type of SB and where on the back the lesion is located, the child can have very few issues or the child can have bowel and bladder problems and limited mobility.