Spina+Bifida

**What is Spina Bifida?**
Spina Bifida is a Latin term meaning ‘open spine' (Godfrey, 2001, p. 19). Medically it refers to a birth defect where the spine does not form completely. As a result, the defect may leave several vertebrae deformed in such a way as to leave the spinal cord exposed. The exposure of the spinal cord usually results in some damage to it. Damage at some point along the spinal cord results in limited brain signals to and from muscles and body organs below where the damage has taken place. Limited communication to and from the brain to muscles and body organs frequently results in reduced development of normal body function. Although Spina Bifida is a skeletal defect, there are a number of conditions which develop from the defect in the spine. People born with Spina Bifida frequently have one or more related defects.

Spina Bifida is considered a Nueural Tube Defect (NTD). This defect occurs during the first four weeks of pregnancy, often before a woman is tested to confirm pregnancy. It is the early development of the defect which makes it both hard to treat and hard to detect prior to ultra-sound testing (Godfrey, 2001, p. 24). By the time the first ultra-sound is completed at 18 weeks, permanent damage is already done if a child has a major Spina Bifida type. The doctor will give the most severe diagnosis attempting to prepare the family for the worst possible case because if the Spina Bifida is detected at the ultra-sound stage, the effects on a child will usually be significant. This also allows for parents to have the option of terminating the pregnancy if they feel the child may suffer. Many cases are also detected by the testing of the mother's blood for the level of alpha-fetoprotein at about 16 weeks of pregnancy. However, the extent of the damage cannot be determined until the child is born. In cases where there are no external findings, the diagnosis is more difficult and may not become evident until neurological abnormalities or develop weeks, months, or even years after birth (Godfrey, 2001, p. 23).
 * Diagnosis**

It is important to note that the effects from Spina Bifida are extremely varied and differ from the various subtypes to be examined. Characteristics include: -severe physical deformation -impairment of hip, leg, knee, and foot muscles -inability to keep body erect -paralysis -lack of sensation or feeling -absent or poor bowel and bladder control -curvature of the spine (scoliosis) -latex alergy (ranging from mild to life threatening -hydrocephalus
 * Symptoms and Characteristics**

Educational issues: The intelligence of people with Spina Bifida varies as it does for everyone. IQ scores for people with Spina Bifida are slightly lower than those without the birth defect. Occasionally, affected individuals have poor short-term memory and poor organization skills.
 * Important Non-Medical Issues**

Social development: Infants and children with Spina Bifida often require early and frequent trips to the hospital. This has an impact on normal social development. The difficulty is in establishing a balance between medial needs with the need for the child to develop into a confident, self-sufficient, and independent adult.

Psychological development: Children with special needs have a tendency to rebel against their disability when they realize that it is permanent. They may become depressed, rebelious, or withdrawn ([|www.spinabifidamoms.com]).

**Different forms of Spina Bifida**
This is the most serious form of Spina Bifida (Wickengren, 1989, p. 342). In this case, the unformed portion of the spinal column allows the spinal cord to protrude from the opening in the spine. Because the spinal cord leaves the protective bone tube of the spine and grows in the ‘sack,’ damage can occur to the nerves. As a result there is usually some degree of paralysis and the loss of feeling below the level of the spinal cord defect. People my have ambulatory problems, loss of sensation, deformities of the hips, knees, or feet, and loss of muscle tone. Typically, a person affected by this form of Spina Bifida will a large 'bump' visible on their back. Bowel and bladder function are typically affected as well.
 * Myelomeningocele (Spina Bifida Cystica)**

Meiningocele is considered less sever than Myelomeningocele because the spinal cord doesn’t leave the protective bone tube. There is still a sack on the back, but the nerves of the spinal cord are not in it. The nerves remain protected and are not damaged as seriously. A person with this form of Spina Bifida will usually have better physical development and bowel and bladder control.
 * Meningocele**

Lipomyelomeningocele is an abnormal fat accumulation that starts below the skin and extends through an opening in the spine to the spinal cord. The skin covered lesion is formed in the buttock and lower spine area. Symptoms, such as muscle weakness and loss of feeling in the lower legs and feet, and bowel or bladder incontinence due to compression on the nerves by the fatty mass during periods of weight gain. The attachment of the fat to the spinal cord may require surgery to release the tethering to the fatty mass (Wickengren, 1989, p. 342).
 * Lipomyelomeningocele**

Spina Bifida Occulta indicates that the defect is where one or more vertebrae are not fully formed but are covered with skin. In this case the opening of the spinal cord is small so it is not able to protrude. The results of this form may include a visible dimple along the spine which often has long dark hairs growing out of it. The effects on bladder and bowel control are usually minimal (Wickengren, 1989, p. 342).
 * Spina Bifida Occulta**

People born with Spina Bifida usually also suffer from Hydrocephalus. This is a condition where cerebalspinal fluid circulation patters are interupted. This fluid often can build up in the areas surrounding the brain. Symptoms include dizziness, severe pain, blurred vision, and vomiting. Left untreated, the pressure causes the skull to enlarge. Hydrocephalus is treated with the insertion of a 'shunt" which allows the excess fluid to be moved to another part of the body ([|http://sbhasa.ca/MedicalQA/medicalqa.htm).]
 * Hydrocephalus**

In North America, Spina Bifida is one of the most common birth defects with 0.7 cases per 1000 live births. According to the Spina Bifida Association of Canada, it is the number one disabling birth defect. The occurrence is slightly higher in whites with a rate of 1.0 per 1000 live births. The highest incidence rates worldwide were found in the Britsh Isles in the 1970’s with more than 6 cases per 1000 live births(Godfrey, 2001, p. 19). Rates have since fallen. Parents of children with Spina Bifida have an increased risk of having a second child with a neural tube defect. Spina Bifida is more likely to appear in a female, but the cause of this is unknown at this time ([|http://en.wikipedia.org/wiki/Spina_bifida).]
 * Incidence**

Major advances in surgical treatment have improved the survival and function of infants with Spina Bifida. Surgery may be carried out during the first few days of life to prevent further injury and infection. Further surgery is usually required to prevent further curvature of the spine. If a person suffers from hydrocephaly, a mechanical shunt may be needed to reduce the amount of spinal fluid near the brain. Becuase of weakness or paralysis below the point of abnormality, most children will need physical therapy, bracing, and other orthopedic assistance to help them walk. To aid with bowel and bladder function a variety of approaches are taken such as bladder catheterization.
 * Treatment**

Open fetal surgery has been performed for Spina Bifida during the last half of pregnancy. After closure of the spinal malfunction, the fetus is returned to the womb. Surgery improves neurological function and prevents further complications while giving birth. Fetal surgery is considered experimental and results have been mixed (Godfrey, 2001, p. 232).

In the 1960’s and 1970’s researchers began to look at the who was more likely to have Spina Bifida. They found the NTD’s were more common among the poor, and the prevalence varied considerably by geography from year to year. These findings suggested that environmental factors played a major role is causing these defects. Research into vitamin intake led to the discovery between a correlation between folic acid intake and the prevention of Spina Bifida. It is no believed that 72%-100% of cases of Spina Bifida can be prevented with folic acid consumed as a vitamin supplement (Godfrey, 2001, p. 37). In the US, it is recommended that a woman of child bearing years consumes about 400µg of synthetic folic acid daily to prevent Spina Bifida and other NTD’s. The American Academy of Pediatrics, the American College of Preventive Medicine, and other groups have supported these recommendations. Many consider this to be one of most significant medical breakthroughs of our time. Not since the Rubella vaccine became available in the 1960’s has there been a comparable opportunity for primary prevention of such a serious birth defect (Godfrey, 2001, p. 24). Folic acid can be found in such foods as broccoli, peas, chickpeas, and brown rice.
 * Prevention**

John Mellancamp has signed on as the offical spokesman for the Spina Bifida and Hydrocephalus Association of Canada, which has its headquarters in Winnipeg (Horbal, 2007, p. 21).
 * Recent Developments**


 * Signs of Spina Bifida in the Classroom**
 * A student may not remember today what he/she appeared to remember last week.
 * They talk a lot about topics that aren't relevant.
 * They do not listen effectively and the other students may find this irritating.
 * Students with Spina Bifida may seem interested and start tasks willingly, but rarely complete anything.
 * They're writing is often very poor.
 * They can learn effectively but this often takes longer than the average student.
 * They may work well when the teacher or aide sits beside them but they get distracted and produce little if left to work on their own.
 * They often forget due dates for work assignments.
 * They may find it difficult to grasp fundamental spatial and mathematical concepts.

Many of these difficulties affect any student, but for individuals with Spina Bifida these problems are pathological and can be grouped under the following headings: language, planning and organisational skills, memory and learning, visuo-motor skills, and attention.

Often students with Spina Bifida are very sociable and talkative and have fairly good vocabulary skills. However, they have difficulty monitoring what they say for logic, relevance, or appropriateness. This poor comprehension can be difficult to detect by a teacher. Often times this "over talk" may be used to cover up their limited ability to do what is required of them. (Australian Spina Bifida Hydrocephalus Association [ASBHA], 1993)
 * Language**

Teachers can help by:
 * insisting that the student maintains a shared topic of conversation.
 * routinely checking the student's understanding of the language they are using.
 * encouraging the student to use language for communication of meaning rather than to manipulate others or to conceal areas of difficulties

Most students with Spina Bifida have some organisational and planning difficulties. One concept that individuals with Spina Bifida often have trouble with is the passage of time. Often students with Spina Bifida don't understand when matters are urgent. They might be unable to generate strategies for solving problems or to alter their approah if the first attempt is unsuccessful. They may seem lost when multi-tasking and they often struggle working independently. (ASBHA, 1993)
 * Planning and Organisational Skills**

Teachers can help by:
 * encouraging organizational strategies (the use of a diary/journal, check lists, agenda book, etc).
 * encouraging the student to proofread their work.
 * breaking down complex taks into smaller steps.

Students with Spina Bifida often have a rapid loss of information over time. They often have difficulty retrieving the appropriate information from long term memory when it is needed. They often struggle with abstract concepts. Sometimes students may appear lazy and simply don't function at the level they are capable of. (ASBHA, 1993)
 * Memory and Learning**

Teachers should:


 * limit the amount of information presented at one time.
 * stress key points in a logical sequence
 * minimize non-important information
 * relate learning to student's interests and life experience with practical activities
 * allow time for rehearsal of information

Alot of individuals with Spina Bifida have trouble with tasks requiring eye-hand coordination and motor planning skills. They often have difficulty with accurately interpreting what they see and then moving accordingly. This issue deals with both gross and fine motor skills, and many individuals may have trouble differentiating between left and right. (ASBHA, 1993)
 * Visuo-Motor Skills**

Teachers can help by:


 * ensuring familiarity with a word processor for the presentation of written work at an early age.
 * If you do assign written work, allow ample opportunity for the completion of assignments.
 * A teacher can think about providing alternative activities which can replace some of the writing activities as well

Individuals with Spina Bifida are often easily distracted and find it difficult to sustain attention until the completion of work. Some have difficulty identifying the most important points of a task and focusing their attention. (ASBHA, 1993)
 * Attention**

Things that can help:
 * repeating instructions often.
 * A quiet work environment
 * Instructions are step by step
 * Adult assistance available to redirect the student after lapses in concentration.
 * Hard working times are broken up by more relaxed activities.

(Physiological needs) A lot of children with spina bifida need training to learn to manage their bowel and bladder functions. Some individuals require catheterization, or the insertion of a tube to permit the passage of urine. Many children learn how to use a catheter on themselves at a very young age. "A successful bladder management program can be incorporated into the regular school day." (National Dissemination Center for Children with Disabilities [NDCCD], 2004)
 * Additional Educational Issues**

(Equipment issues / Curriculum flexibility) Structural changes made to a school are often beneficial. Students with Spina Bifida need to learn mobility skills, but the existence of elevators or ramps are very important. Schedule or location changes can often help the student with Spina Bifida as well. (ex. offering a course on the main floor instead of on the third floor). Students with Spina Bifida also often require crutches, braces, or wheelchairs.

(Social issues) As previously mentioned, mobility is a huge issue for individuals with Spina Bifida. Transportation is critical to promote socialization. A disability like spina bifida can have a profound effect on a child's emotional and social development. To promote growth, families and teachers should encourage children to be independent and participate in activities with other students when safe and appropriate to do so. (NDCCD, 2004) Children growing up with Spina Bifida have increased levels of depression, isolation, self-esteem issues, exclusion, and dating/relationship problems when compared to their peers. Most students going through adolescence will experience these problems, but the addition of a disability is most likely responsible for the extreme difficulties. (North Carolina Office on Disablity and Health [NCODH], 2000)

[|Spina Bifida and Hydrocephalus Canada] Suite 428-167 Lombard Avenue Winnipeg MB Canada R3B 0V3 (204) 925-3650 1-800-565-9488 Fax: (204) 925-3654 Email: info@sbhac.ca **National Bursary Program** A national bursary program exists to help those with Spina Bifida succeed in post secondary studies. All requests should be directed to: National Bursay Program c/o Spina Bifida and Hydrocephalus Canada 428-167 Lombard Avenue Winnipeg, MB R3B 0V3
 * Resources and Supports**

1-800-565-9488

**Websites** [|Spina Bifida Association] - The Spina Bifida Association (SBA) serves adult and children who live with Spina Bifida. The association aims to build understanding of the condition as well as spread the message of prevention. [|International Federation of Spina Bifida and Hydrocephalus] - This umbrella organization acts to raise awareness of Spina Bifida and Hydrocephalus on a global scale. [|Children With Spina Bifida] - This website was formed in 1996. The website aims to assist parents and and providers with resources to aid in the caring of children with Spina Bifida. [|Spina Bifida and Hydrocephalus Association of Alberta] - A group that aims to imporve the quality of life of those living with Spina Bifida and Hydrocephalus through awareness, education and research. [|Spina Bifida Central] - This website is provides those with Spina Bifida an outlet to share experiences and provide support. [|The Spinal Cord Information Network] - This website has a comprehensive data base on information pertaining to spinal cord injuries/defects. [|Hydrocephalus Association] - This website aims to help and assist those living with Hydrocephalus, a condition often associated with Spina Bifida. [|Latex Alergy Association] - This website is designed to link those with latex allergies with information regarding the allergy.

Works Cited

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