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Spina Bifida: Research & Treatment News

  • Synopsis: Spina bifida is a serious birth defect that occurs when the tissue surrounding the developing spinal cord of a fetus does not close properly.

Definition: Defining the Meaning of Spina Bifida

Spina bifida (Latin: "split spine") is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain un-fused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord.

Main Document

What is Spina Bifida

Spina bifida is a serious birth defect that occurs when the tissue surrounding the developing spinal cord of a fetus doesn't close properly. Spina bifida is considered part of a group of birth defects called neural tube defects, which affect the embryonic structure that eventually develops into the baby's brain, spinal cord and tissues that enclose them.

Spina Bifida is not one condition; it is a multitude of problems that affect the mind, the body, and also the spirit - No two cases of Spina Bifida are ever the same.

Under normal circumstances, the neural tube forms in the developing baby in the first few weeks of pregnancy and closes by the 28th day after conception.

Later, the top of this tube becomes the baby's brain, and the remainder of the tube becomes the baby's spinal cord. In babies with spina bifida, an area along the lower end of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones that make up the backbone (vertebrae) . This can also occur in the middle or upper end of the spine, but it's less common.

Spina bifida malformations fall into four categories:

spina bifida occulta - In occulta there is no opening of the back, but the outer part of some of the vertebrae are not completely closed. The split in the vertebrae is so small that the spinal cord does not protrude. The skin at the site of the lesion may be normal, or it may have some hair growing from it; there may be a dimple in the skin, a lipoma, a dermal sinus or a birthmark. Many people with the mildest form of this type of spina bifida do not even know they have it.

spina bifida cystica (myelomeningocele) - In this, the most serious form, the un-fused portion of the spinal column allows the spinal cord to protrude through an opening in the overlying vertebrae. The meningeal membranes that cover the spinal cord may or may not form a sac enclosing the spinal elements.

meningocele - In a posterior meningocele, the outer faces of some vertebrae are open and the meninges are damaged and pushed out through the opening, appearing as a sac or cyst which contains cerebrospinal fluid. The spinal cord and nerves are not involved and their function is normal.

Myelomeningocele - In this, the most serious and common form, the un-fused portion of the spinal column allows the spinal cord to protrude through an opening. The meningeal membranes that cover the spinal cord form a sac enclosing the spinal elements. Spina bifida with myeloschisis is the most severe form of spina bifida cystica. In this defect, the involved area is represented by a flattened, plate-like mass of nervous tissue with no overlying membrane. The exposure of these nerves and tissues make the baby more prone to life-threatening infections.

The protruded portion of the spinal cord and the nerves which originate at that level of the cord are damaged or not properly developed. As a result, there is usually some degree of paralysis and loss of sensation below the level of the spinal cord defect. Thus, the higher the level of the defect the more severe the associated nerve dysfunction and resultant paralysis. People may have ambulatory problems, loss of sensation, deformities of the hips, knees or feet and loss of muscle tone. Depending on the location of the lesion, intense pain may occur originating in the lower back, and continuing down the leg to the back of the knee.

Tethered Spinal Cord syndrome symptoms include:

Lower body pain, leg weakness, incontinence, scoliosis, and numbness.

The most common location of the malformations is the lumbar and sacral areas of the spinal cord. The lumbar nerves control the muscles in the hip, leg, knee and foot, and help to keep the body erect. The sacral nerves control some of the muscles in the feet, bowel and urinary bladder, and in males, the ability to have an erection.

Spina bifida is one of the more common birth defects in the United States occurring in approximately one out of every 1,000 to 2,000 births each year.

Occurrence of Spina bifida

In the United States, there are 65 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by Spina Bifida. Birth defects can happen in any family and in fact, 95 percent of neural tube defects (NTDs) occur in women with no personal or family history of NTDs.

According to the CDC, some risk factors are known:

There is no single cause of spina bifida nor any known way to prevent it entirely.

Dietary supplementation with folic acid has been shown to be helpful in preventing spina bifida. Sources of folic acid include, whole grains, fortified breakfast cereals, dried beans, leaf vegetables and fruits.

Testing for Spina Bifida when Pregnant

Pregnant mothers to be may be able to find out if a baby has spina bifida by taking certain prenatal tests. The maternal serum alpha-fetoprotein (AFP) test, performed between the 16th and 18th weeks of pregnancy, measures the amount of alpha-fetoprotein that the fetus produces. If the amount is high, the test is repeated because in many cases, high AFP readings are false. If the amount is high once more, another test or tests will be done to double-check and confirm the diagnosis.

Amniocentesis can also help determine whether a baby has spina bifida. A needle is inserted through the mother's tummy and into the uterus to collect fluid that is tested for AFP.

Doctors may also use ultrasound to see if a baby has spina bifida; in some cases, the spinal defect can be seen on the ultrasound study.

Cost

The average cost of caring for a child born with spina bifida for life is said to be around $636,000.00. This is only an average cost, for many families the total cost may be over $1,000,000. The physical and emotional tolls upon the families affected are high as well.

What is the The Agent Orange Benefits Act in Regards to Spina Bifida

The Agent Orange Benefits Act is a law that established a benefits package for children of Vietnam veterans who were born with Spina Bifida, possibly as a result of exposure of one or both parents to herbicides during active service in Vietnam.

The Agent Orange Benefits Act is authorized by the Department of Veterans Affairs and provides certain benefits to parents of a child born with Spina Bifida including lifetime health care services for Spina Bifida and "any disability associated" with Spina Bifida, and in addition a monthly allowance from $200 - $1,200, plus Veterans Affairs vocational training and rehabilitation services.

Veterans Affairs defines Spina bifida as all forms except Spina Bifida Occulta. To apply for these benefits call the Department of Veterans Affairs at 1-888-820-1756 for more information.

Treatment for Spina bifida

Currently there is no cure for Spina bifida because the nerve tissue cannot be replaced or repaired. Treatment for the variety of effects of may include surgery, medication, and physiotherapy.

Many individuals with Spina bifida will require assistive devices such as braces, crutches, and/or wheelchairs.

Ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual's life.

Surgery to close the newborn's spinal opening is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

What is the prognosis for children born with Spina bifida

The prognosis for individuals with Spina bifida depends on the number and severity of abnormalities. Prognosis is poorest for those with complete paralysis, hydrocephalus, and other congenital defects.

With proper care, most children with SB live well into adulthood but they often have lifelong disabilities and need many surgeries.

Update from NINDS (National Institute of Neurological Disorders)

Recent studies into Spina bifida have revealed the addition of folic acid to the diet of women during child bearing age may significantly reduce the incidence of neural tube defects. Therefore it is has been recommended that all women of child-bearing age consume 0.4 mg of folic acid daily in a vitamin or in foods that have been enriched with folic acid. Along with taking a vitamin or eating a cereal that has 100% DV of folic acid, women should always eat a healthy diet that has lots of fresh fruits and vegetables and other healthy foods.

Folic acid might also help prevent other birth defects, such as cleft lip and palate and some heart defects. There may also be other health benefits of taking folic acid for both women and men. However more research and study ;is needed to confirm these other health benefits.

View a list of Famous People with Spina Bifida and people who had Spina Bifida in the past who contributed to society.

Spina Bifida Awareness Ribbon

Spina Bifida Awareness RibbonAs the national voice and symbol for Spina Bifida, the Spina Bifida Association ribbon color is blue and teal and represents all forms of Spina Bifida including: Occult Spinal Dysraphism, Spina Bifida Occulta, Meningocele and Myelomeningocele. The ribbon identifies a person living with or affected by Spina Bifida and includes parents, family, friends, caregivers, and medical and health professionals.

Quick Facts: Detecting Spina Bifida Before Birth

Spina Bifida can usually be detected before birth by one or more of the following 3 tests.

Statistics: U.S. Spina Bifida Facts &

90 to 95% of babies born with spina bifida are born to parents with no family history of spina bifida.

Spina Bifida is the most common permanently disabling birth defect in the United States, with approx. 1,500 babies born with spina bifida per year.

Hispanic women have the highest rate of having a child affected by spina bifida compared with Non-Hispanic White and Non-Hispanic Black women: Hispanic: 4.17 per 10,000; Non-Hispanic Black or African-American: 2.64 per10,000; Non-Hispanic White: 3.22 per 10,000

The prevalence rate of spina bifida declined 31% from the pre-fortification (1995 to 1996) rate of 5.04 per 10,000 to the post-fortification (1998 to 2006) rate of 3.49 per 10,000.

If parents have one child with spina bifida, the risk of recurrence increases to between 1 and 5 out of 100. If one parent has spina bifida, the chances of having a child with spina bifida are between 1 and 5 percent. If both parents have spina bifida, the chances of having a child with spina bifida increases to 15 percent.

Latest Spina Bifida Publications

Full List of Spina Bifida Documents (8 Items)




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