PRN has gathered a variety of resources available online about Spina Bifida. These resources include fact sheets, web sites, articles, Texas support groups, and more. The lists of resources follow some frequently asked questions (faq's) pertaining to Spina Bifida, secondary conditions, and education.

If you have questions about Spina Bifida or need help with issues related to education, please contact your PATH, PEN, or TEAM Regional Coordinator. To find your Regional Coordinator, check our Texas PTI Map or call us at 1-800-866-4726.

Frequently Asked Questions about Spina Bifida

1. What is Spina Bifida?

Spina Bifida occurs when the lower end of the neural tube fails to close properly. As a result, the spinal cord and spine do not develop properly. Often, the spinal cord will be exposed and the infant must have surgery within the first hours after birth to minimize the damage to the spinal cord. Paralysis, loss of bowel and bladder control, water on the brain (hydrocephalus) and learning disabilities are among the issues associated with Spina Bifida. Approximately 85% of infants born with Spina Bifida survive. Despite varying degrees of disability, many lead successful and productive lives. In general, the three types of spina bifida (from mild to severe) are:

1. Spina Bifida Occulta: There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.

2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the "meningocele." However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways.

3. Myelomeningocele: This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed. Generally, people use the terms "spina bifida" and "myelomeningocele" interchangeably.

2. Is there a cure for Spina Bifida?

There is no cure for Spina Bifida because the nerve tissue cannot be replaced or repaired. Treatment for the variety of effects of Spina Bifida may include surgery, medication, and physiotherapy. Many individuals with Spina Bifida will need assistive devices such as braces, crutches, or wheelchairs. Ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual's life.

3. What are secondary conditions associated with Spina Bifida?

Due to a wide range of neurological damage and mobility impairment, it can be difficult to identify some secondary conditions. Examples of secondary conditions associated with spina bifida are latex allergy, tendonitis, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, attaining and retaining mobility, depression, and social and sexual issues. While it is not known why, individuals with spina bifida may have a heightened sensitivity to latex (rubber) products, ranging from toys to medical supplies. Symptoms include watery eyes, wheezing, hives, rash, swelling, and in severe cases a life threatening allergic reaction. These responses can occur when items containing latex touch the skin, the mucous membranes (like the mouth, genitals, bladder or rectum), open areas or bloodstream (especially during surgery).

For more information about Spina Bifida and secondary conditions, try these resources:

• Spina Bifida Association Fact Sheet: Spina Bifida Occulta
  
  
• Toileting Training the Child with Spina Bifida*
  
  
• Understanding Spina Bifida

FAQ's about Spina Bifida and Education

1. Are there any learning disabilities associated with Spina Bifida?

Children with spina bifida/ hydrocephalus often show unique learning strengths and weaknesses that affect their schoolwork. Parents and schools need to work together to help the young people meet their physical, social, emotional, and academic goals.

Most children with spina bifida/ hydrocephalus have I.Q. scores in the average range. This result, however, is somewhat deceptive because there is a broad range of scores on intelligence test among children with spina bifida/ hydrocephalus ranging from the gifted to mental retardation. Also, children with spina bifida/ hydrocephalus often have major differences among their abilities due to orthopedic and neurological problems. Both parents and teachers, however, must recognize that learning problems are routinely a part of children with spina bifida/ hydrocephalus. These problems contribute to poor academic functioning and class work.

As we acknowledge that children with spina bifida do have learning problems, we are better able to recognize them and help. Often parents or teachers notice that something is interfering with a youngster’s success at school but they are not sure what is wrong. In addition, it often helps to have a psychological evaluation, which would evaluate a child’s intelligence, academic levels (e.g. visual perception, receptive and expressive language skills). Because of more basic learning problems, it is helpful to evaluate neuropsychological functions. These include attention, perceptual-motor processes, reasoning and problem solving, organization and sequencing skills, and memory. If the child is receiving special education services, the parent can request the Individual Education Program (IEP) be written so that these problems are reflected in the plan.

Support Resources

Central and South Texas - Spina Bifida Association of Texas (SBATX)

Address: 10615 Perrin Beitel, Suite 701, San Antonio, TX 78217
Phone: 210-653-1800
Email: sbinfo@sbatx.org
Web site: www.sbatx.org

Web Sites

American Latex Allergy Association
www.latexallergyresources.org
The American Latex Allergy Association is a national non-profit organization that creates awareness of latex allergy through education, and provides support to individuals who have been diagnosed with latex allergy. This web site is designed to provide educational materials, publications and product information to assist you with your understanding of natural rubber latex allergy.

Birth Defect Research for Children, Inc.
www.birthdefects.org
Birth Defect Research for Children, Inc. (BDRC) is a non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children.

Children with Spina Bifida: A Resource Page for Parents
http://www.waisman.wisc.edu/~rowley/sb-kids/

Hydrocephalus Association
www.hydroassoc.org
Our mission is to provide support, education and advocacy for individuals, families and professionals. Our goal is to ensure that families and individuals dealing with the complex issues of hydrocephalus receive: 1. Personal support, 2. Comprehensive educational material, 3. Ongoing quality health care. We provide a wealth of services and resources to our members and non-members alike.

Spina Bifida Association of America
www.sbaa.org
The mission of SBA is to promote the prevention of spina bifida and to enhance the lives of all affected.

Spina Bifida Association of Texas (SBATX)
www.sbatx.org
Our association has a wide variety of information on hand about medical, educational and social issues related to Spina Bifida. We are constantly adding new information as it becomes available. We provide information to parents when the need arises.