WHAT IS SPINA BIFIDA?

Q: What is Spina Bifida?

 

 

A: Spina Bifida, latin for "Split Spine", occurs within the first month of pregnancy resulting in incomplete closure of the spinal column. It is considered the most frequently occurring, permanently disabiling birth defect. According to the Center for Disease Control and Prevention (CDC), 1,500 babies are born with Spina Bifida each year. Read More HERE

 

 

Q: Are there different types of Spina Bifida? 

 

 

A: Yes, there are 4 types. 

 

1. Occult Spinal Dysraphism (OSD) - Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, hyperpigmented patches on their back, tufts of hair or small lumps. In OSD, the spinal cord my not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests. 

 

2. Spina Bifida Occulta -  It is often called "hidden Spina Bifida" because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta does not cause harm and has no visible signs. The spinal cord and nerves are usually fine. People find out that they have it after having an X-ray of their back. It is considered an incidental finding because the X-ray is done for other reasons. However, in a small group with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon. 

 

3. Meningocele - A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities. 

 

4. Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica - This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person's head grows too big and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor. *Refer to Image Above* 

 

 

Q: What Causes Spina Bifida? 

 

 

A: The cause of Spina Bifida is not known for sure, however, scientists believe that genetic and environmental factors may act together to cause Spina Bifida. 

 

 

Q: How is Spina Bifida treated? 

 

 

A: A child with the most severe form of Spina Bifida usually is operated on within 24 hours after birth. Surgery is generally performed to minimize the risk of infection and to preserve existing function in the spinal cord. 

 

 

Meningocele, which does not involve the spinal cord, can be surgically repaired, usually with no paralysis. Although most children with meningocele develop normally, affected children should be evaluated for hydrocephalus and bladder issues. Spina Bifida occulta, in most cases, usually require no treatment. 

 

 

Q: Can anything be done to prevent Spina Bifida? 

 

 

A: Yes, recent studies have shown that if women of child bearing age were to consume 400 micrograms (0.4 milligrams) of folic acid prior to becoming pregnant and throughout the first trimester of pregnancy, the incidence of Spina Bifida can be reduced by up to 70%. 

 

With half of pregancies in the United States unplanned, health professionals encourage women to take a multi-vitamin containing 400 mcg of folic acid each day throughout their reproductive years. In addition, women with increased risk for Spina Bifida (women who have a child with SB, have had an affected pregnancy, or have SB themselves) should take 400 micrograms of folic acid by prescription for 1 to 3 months before becoming pregnant. 

 

 

Q: What conditions are associated with Spina Bifida?

 

 

A: Special attention is needed to identify and treat condition associated with SB. Due to the wide range of neurological damage and mobility impairments, it can be difficult to identify some secondary conditions. Attention should be focused on the psychological and social development of children and young adults with SB. Conditions associated with SB include mobility impairments, bowel and bladder complication, latex allergy, tendonitis, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, and social and sexual issues. 

 

 

Q: What physical limitations exist?

 

 

A: Persons with SB need to learn mobility skills and often with the use of crutches, braces, or wheelchairs can achieve more independence. Also, with new techniques, children can become independent in managing their bowl and bladder problems. Physical disabilities like SB can have profound effects on the child's emotional and social development. It is important that health care professionals, teachers, and parents understand the child's physical capabilities and limitations. To promote personal growth, they should encourage children (within the limit of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care. 

 

 

Q: Can Spina Bifida be detected before birth?

 

 

A: Yes. There are 3 prenatal tests that can be done to detect SB. 

 

 

1. Most women in the United States have blood drawn during the 16th-18th week of pregnancy to check the blood levels of a protein called Alpha-Fetoprotein (AFP screen test), which is elevated in about in about 75-80% of women having fetuses with SB. 

 

 

2. Ultrasound (sonograms) of the fetus can detect signs of SB such as open spine. 

 

 

3. Maternal Amniocentesis, in which a small sample of the amniotic fluid is withdrawn through a thin needle, can detect alpha fetoprotein or another protein. Unfortunately, there are limitations to any test, and these test do not identify a child with SB in every single case. 

 

 

Q: What is the Long-Term Outlook for Children with Spina Bifida?

 

 

A: Fortunately, with the proper medical care, children with SB can live active and productive lives. Most are successful in school and many are actively involved in adaptive sports activities despite their physical challenges. Due to medical advancements and surgical interventions over the past 40 years, approximately 90% of babies born with SB survive into adulthood, approximately 80% have normal IQ scores, and approximately 75% are in competitive sports and recreational activities. 

 

 

The Spina Bifida Association has published information sheets that covers a wide range of topics, related to Spina Bifida. To view them, click HERE

 

 

Note: This information does not constitute as medical advice for any individual. As specific cases may vary from the general information presented here, Spina Bifida of Louisiana (SB LA) advises readers to consult with a qualified medical or other professional on an individual basis. 

 

Help us empower children, adults and families of those affected by spina bifida. For over 20 years, SB of Louisiana has responded to the needs of our families and continue to be committed to securing a better life for those who live with spina bifida because they deserve nothing less! 

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Telephone: ​(504) 737-5181

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