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Madisons Foundation - Moms And Dads In Search Of Needed Support

Spina Bifida
Monday, 21 July 2003
Wednesday, 04 February 2004


Spina bifida is a type of neural tube disorder that involves incomplete development of the brain, spinal cord, and/or the protective coverings. The neural tube is the primitive form of the spinal cord. There are three types of spina bifida that range in severity. The mildest form is spina bifida occulta or spina bifida aperta, which involves an incomplete fusion of the vertebral bones without any damage of the spinal cord. Perhaps as many as 40% of Americans have spina bifida occulta but are unaware since there are no symptoms. The next type is meningocele, in which the protective coverings around the spinal cord (called the meninges) are pushed out through the opening of the vertebrae in a sac, but the spinal cord is still intact. The most severe form is myelomeningocele, in which a portion of the spinal cord protrudes through the back.


The incidence of spina bifida has declined approximately 24% since folic acid fortification was instituted in all enriched cereal grain products in 1996. Spina bifida occurs in approximately 7 out of every 10,000 live births in the U.S. The occurrence is greater among females than males. The rates of spina bifida are higher in Hispanics and whites of European descent than in Ashkenazi Jews, Asians and African Americans.

Signs and Symptoms

It is often visibly obvious at birth when a child has spina bifida. The bones do not close around the spinal cord, and the meninges bulge out and are visible on the infant's back. If the nerves or the spinal cord in the meningeal sac are damaged, paralysis can occur. Hydrocephalus, which is accumulation of fluid in the brain, also occurs in 80-90% of the children with spina bifida. Spine, hip, leg and foot deformities are often caused by imbalances in muscle strength and function due to a variable degree of paralysis and increased muscle tone, or spasticity. The most common problem that children may encounter is bladder and bowel problems due to the inability to voluntarily relax the muscles (sphincters) that hold urine and stool.

Possible Causes

The cause of spina bifida is unknown. However, there does appear to be a genetic predisposition for the disease. The risk for having a child with spina bifida after one affected child increases approximately 20 times.  It also appears that nutritional and environmental factors play a role. A woman can reduce her risk for having a child with spina bifida by 50% if she takes folic acid during the prenatal period, especially during the first 12 weeks of gestation. Other risk factors include maternal insulin-dependent diabetes, use of certain anti-seizure medications (Valproic acid/Depakene and Carbamazapine/Tegretol), medically diagnosed obesity and lower socio-economic status. 


The diagnosis of spina bifida can be made by examination of the infant's spine. It can also be detected prenatally using the "Maternal Triple Screen" blood test between the 15th and 20th weeks of pregnancy.  An increase in the amount of Alpha Fetal Protein in the maternal bloodstream (MSAFP) can suggest the diagnosis. This protein can also be measured in the amniotic fluid. It is important to know that this test in not specific and can also uncover defects including abdominal wall defects, tumors, dermatologic disorders, etc. Also, this test does not detect closed spina bifida. An ultrasound is also an effective technique for detecting neural tube defects and can potentially detect more neural tube defects than the MSAFP.


The goal of treatment is to allow the child to achieve the highest possible level of function and independence. There is no cure for spina bifida if the nerve tissue is damaged. Surgery is usually performed early after birth, usually within the first 24 hours of life to minimize the risk of infection and preserve the function of the spinal cord that is still intact. If the child also has hydrocephalus, a neurosurgical procedure is performed which relieves the fluid build-up in the brain by redirecting the fluid to the abdomen by way of a tube known as a shunt. Children with spina bifida usually need prolonged physical therapy and adaptive training. Many patients will need braces, crutches, orthotics, walkers or wheelchairs to help with mobility.  Many will need to manage their urinary system with a program of catheterization. They will also need to have a bowel and bladder management program, which may include inserting a tube into their bladders to drain urine and they may require medications to improve their dryness.


The prognosis for children with spina bifida depends on the level of the lesion, the presence and severity of neurologic deficits, hydrocephalus, and other central nervous system anomalies. About 85-90% of children survive. If death does occur, it usually happens before the age of four. The survivors often have a normal lifespan, and approximately 70% of survivors have normal intelligence. However, learning problems and seizure disorders are more common among children with spina bifida than in the general population.  With multidisciplinary care, most children with spina bifida are able to live within the mainstream of society and live productive and happy lives.

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.


Spina Bifida Association of America

A comprehensive website with information about spina bifida as well as about ongoing research and available support.

National Information Center for Children and Youth with Disabilities

A clearly written summary of spina bifida with information about other useful resources.

Children with Spina Bifida

A great site filled with information and support resources for parents of children with spina bifida.

Google Search for Spina Bifida

References and Sources

If you would like to be connected to parents of children with this disease, please fill out this brief form.

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