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Disability Benefits for Spina Bifida

Spina Bifida

Spina bifida is a congenital disorder where, at birth, the “neural tube, “ which is the embryonic structure that gives rise to the spine, spinal cord, and brain, fails to close properly and leaves a hole or a gap in the spinal column, through which the nerves and spinal cord may protrude.

Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. Damage to the spinal cord and nerves may occur at that area, depending on the size and location of the defect.

Types of Spina Bifida

1.)  Myelomeningocele

Myelomeningocele is the most serious type of spina bifida, because the spinal cord and nerves protrude through the gap in the spine. They can be severely damaged and may result in complications that include bladder and bowel incontinence, weakness, numbness and tingling in the lower extremities, and in severe cases, paralysis of the legs or other parts of the body.

2.)  Meningocele is a type of spina bifida where a sac of fluid comes through an opening in the baby's back, but the spinal cord is not in this sac. Therefore, there is typically little or no nerve damage and, there are only minor disabilities.

3.)  Spina Bifida Occulta

This is the mildest type of spina bifida, where there is only a gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

[Reference:https://www.cdc.gov/ncbddd/spinabifida/facts.html]

Diagnosis

Spina bifida can be diagnosed during pregnancy by measuring high levels of alpha-fetoprotein (AFP) in the mother's blood or in the amniotic fluid that surrounds the baby in utero.

An ultrasound scan may detect the “gap” in the spine.

However, if the spina bifida defect is small, as in either a “meningocele” or especially in “spinal bifida occulta,” the condition may not be diagnosed in utero, and a diagnosis may not be made until the baby is born or even into adulthood. X-rays, MRI, or a CT scan help to diagnose it after birth.

Treatment

Treatment depends on the severity of the spina bifida. In severe cases of spina bifida, when the baby has a large myelomeningocele, doctors may perform surgery in uteroto close the defect in the spine before the baby is born. In less urgent cases, the spinal defect can be surgically closed after birth.

Many babies with spina bifida also have “hydrocephalus” (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell and cause brain injury.

For hydrocephalus, a surgeon can put a shunt in the brain. A shunt is a small hollow tube that will help drain the fluid from the baby's brain and protect it from too much pressure.

Another complication of spina bifida is a “tethered spinal cord,” which is an attachment of the end of the spinal cord to the structures in the spinal canal. Surgery is usually required to free the spinal cord and prevent neurological damage to the spinal cord and nerves.

Symptoms may include back pain, scoliosis, leg and foot weakness, changes in bladder or bowel control, and other problems.

Disability Related to Spina Bifida

In mild cases (e.g., spina bifida occulta) there may be no complications or functional disability. In fact, many patients who have spina bifida occulta do not even know they have this condition until it is diagnosed by imaging studies (often by serendipity). These patients typically do not require treatment and usually have no symptoms. 

Other patients, with more serious spina bifida (e.g., myelomeningocele) may have paralysis in the lower extremities that require walking with braces, crutches or walkers, or they are unable to walk at all and are wheelchair bound.

Spina bifida can range from mild to severe. While some people have little or no disability, other less fortunate people may be paralyzed in one or more parts of their body.

Causes and Prevention

Although doctors do not know all the factors, both environmental and genetic, that cause spina bifida, there is good scientific evidence to show that taking 400 micrograms (mcg) of folic acid every day decreases the risk of spina bifida.

The Centers for Disease Control and Prevention (CDC) points out that spina bifida develops in the first few weeks of pregnancy, often before a woman knows she's pregnant. Although folic acid is not a guarantee that a woman will have a healthy pregnancy, taking folic acid can help reduce a woman's risk of having a pregnancy affected by spina bifida. Because half of all pregnancies in the United States are unplanned, it is important that all women who can become pregnant take 400 mcg of folic acid daily. [Reference:https://www.cdc.gov/ncbddd/spinabifida/treatment.html]

Disability Benefits for Spina Bifida

Whether it's for long-term disability (LTD) benefits under the Social Security Act (SSDI) or under an employer-provided group disability plan (ERISA), it's important for your doctor to diagnose the specific type of spina bifida you have and to document the symptoms and the resultant disabilities that it causes. 

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