What is Spina Bifida? Spina bifida is a neural tube defect (NTD) which occurs within the first four weeks of pregnancy. The NTD occurs when the vertebrae and/or spinal cord of the fetus fail to develop properly, and results in varying degrees of damage to the spinal cord and nervous system. The damage is permanent. SB is usually accompanied by hydrocephalus. Treatment is urgent to minimize further neurological damage in the opening in the spine. The three most common types of SB are: Myelomeningocele the severest form in which the spinal cord and its protective covering, the meninges, protrude from the opening in the spine. Meningocele the spinal cord develops normally, but the meninges protrudes from the opening created by damaged or missing vertebrae and may be exposed. Occulta This form of SB, where one or more vertebrae are malformed, is covered by a layer of skin. Occulta is the mildest form. What causes Spina Bifida? There is no single known cause of SB. Research continues into the effects of factors such as heredity, nutrition, environment and pollution, and physical damage to the embryo. How Many Canadians Have Spina Bifida? Thousands. Approximately one in every 750 babies born in Canada are born with SB. Eighty percent of those individuals will also have hydrocephalus. The number of individuals with spina bifida occulta can only be estimated. What are the Effects of Spina Bifida? Infants born with SB sometimes have an open lesion on their spine where the significant damage to the nerves and spinal cord has occured. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion. Even with no lesion there may be improperly formed or missing vertebrae, and accompanying nerve damage. In addition to the physical and mobility difficulties, most individuals with SB or hydrocephalus will have some form of learning disability. This means that they are likely to have learning problems in school, in spite of having average or above average intelligence. Is There a Cure for Spina Bifida? No. There is no cure for either of these conditions as nerve tissue cannot be replaced or repaired. Is There Treatment? Yes. Treatment for the variety of effects of SB includes surgery, medication, physiotherapy and the use of assistive devices. Many people with SB will need support to walk such as braces, splints or crutches, many will need wheelchairs, and almost all will have some form of bladder and bowel dysfunction. These aren’t conditions they outgrow; they learn to control and live with them. Ongoing therapy, medical care and/or surgical treatments will be necessary to prevent and manage complications throughout an individual’s life. Research is greatly needed to develop better methods of meeting the challenges and complications posed by SB. How can SB be Prevented? Recent research indicates that addition of the bvitamin, folic acid, to the diet of women of child bearing age may significantly reduce the incidence of NTDs such as spina bifida. Because the NTD occurs before a woman is likely to know she is pregnant, all women capable of becoming pregnant should consume 0.4mg of folic acid daily. This is the amount usually contained in most daily multivitamin supplements. Women with a previous NTD affected pregnancy or a closefamily history of NTDs, should supplement their daily diet with 4mg of folic acid. Women should consult their physician about folic acid. The specific causes of NTDs, however, are still unknown. Researchers believe they may be related to genetic and/or environmental factors. Much more work needs to be done to find the answers to these questions. What Does the Future Hold? In spite of being Canada’s most common disabling birth defect, SB and hydrocephalus remain unknown to many people. Prior to the 1960’s the majority of babies born with SB or hydrocephalus died. Today, thanks to medical advances, nearly all newborns with SB and/or hydrocephalus can look forward to a future which holds more options than ever before. To allow the individual to reach his or her potential, however, the cooperation of society and the coordination of services medical, nursing, social, educational and community is vital. Spina Bifida Associations across Canada offer support and educational materials to parents, families, and individuals with spina bifida or hydrocephalus, as well as to educators, care givers and other professionals.
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