Our Mission
To promote the prevention of Spina Bifida and enhance the lives of all affected.
What is Spina Bifida?
Spina Bifida is a neural tube defect where the bones of the spine (vertebrae) do not form properly and the spinal column does not close all the way. A sac of fluid comes through the opening in the baby's back. Part of the spinal cord in this sac is often damaged. This damage may occur before a woman even knows she is pregnant. The severity of the defect depends on the size and location of the opening in the spine and which part of the spinal cord and nerves are affected. In open Spina Bifida, the spinal cords might be tethered, where the bottom of the spinal cord floats around freely in the spinal canal. Since a tethered spinal cord is attached to the spinal canal, as a person grows, the spinal cord stretches and can cause permanent damage to the spinal nerves.
Cause
It is uncertain what causes Spina Bifida. Scientists suspect Spina Bifida is caused by genetic, nutritional, and environmental risk factors. Research also indicates that folic acid deficiency in the mother's diet is a key factor. According to the FDA, certain drugs, such as depakote and other antidepressants or anti-epileptic drugs can also cause Spina Bifida. Spina Bifida can also be caused by Agent Orange.
Complications
Complications of the Spina Bifida birth defect include a wide range of neurological damage and mobility impairments. This results in difficulties managing day to day life and the associated mental anguish of having to manage these medical difficulties consistently throughout the day.
Complications include:
- numerous surgeries
- bowel & bladder dysfunction
- incontinence
- urinary tract infections
- catheters
- kidney deterioration
- gastrointestinal disorders
- hypertension
- back pain
- scoliosis (crooked spine)
- leg & foot weakness
- skin breakdown
- social & sexual issues
- learning disabilties
- executive functioning
- depression & anxiety
- alcohol & substance abuse
- tendonitis
- obesity
Those who have paralysis may need wheelchairs. Others might need walkers, crutches, or braces. Sores, calluses, blisters, and burns can develop on the feet, ankles, and hips. These may go undetected due to the lack of sensation.
Treatment
Specialized medical care by an orthopedist, a urologist, a mental health provider, or a neurosurgeon is often required to identify and treat conditions associated with Spina Bifida. Due to the wide range of neurological damage and mobility impairments, it can be difficult to identify some secondary conditions. Significant treatment should be focused on the psychological and social development.
Cost of Spina Bifida
Spina Bifida is the most common permanently disabling birth defect in the United States. According to the NIH (National Institutes of Health) and the CDC (Centers for Disease Control & Prevention), as of May 2016 the present lifetime cost per infant with Spina Bifida is estimated to be $791,900. The CDC further states the annual medical care and surgical costs for people with Spina Bifida exceed $200 million.
Thank you Danielle, Stephanie, and Joleen for sharing with us your experiences concerning Spina Bifida. To learn more, donate, or volunteer please see link below.
