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An aspect of the Center for Children and Families

Topic:spina bifida
Researched and written by: Melissa Furry
                                                I attest that the following report is a product of my own original work.

Summary
Full Report
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References
 


Summary
 

Abstract

A child who has spina bifida has specific needs not only at home, but once he or she enters the classroom. The purpose of this paper is to effectively describe these needs as well as some possible treatments. Spina bifida is a common birth defect in which there is an opening on the child’s back and a section of the spine is exposed. Although surgery can close the opening, many medical problems may still exist that a teacher should know about in order to appropriately educate that child. A child with spina bifida may also need social and emotional support in school. With the right knowledge the school can meet these needs in a way that benefits the child.

 

 
Full Report

Overview and Definition of Spina Bifida

Spina Bifida is a common birth defect in children that occurs frequently in the United States. According to Korabek and Cuvo (1986) spina bifida develops during the fourth week of a woman’s pregnancy when the neural plate fails to develop into a tubular structure. Later in the development of the fetus, bones do not cover this area of the spinal cord, but rather stay open creating two short spines instead of one long one which runs the length of the fetus’s back. When the infant is born there will be several noticeable defects. An obvious cyst or lump on the back that will be covered with a thin layer of skin or membrane will be one. Another defect is that the cyst may leak cerebrospinal fluid.

            Characteristics of Spina Bifida

             Korabek and Cuvo (1986) stated that spina bifida occurs in two distinct types: spina bifida

occulta and spina bifida aperta. The first type usually causes the individual no physical complaints

because the problem is contained in their body. In the occulta type, bone plates fails to form over one

or more vertebrae but there is no open wound. A person with this disability may not even know that

they have it until it is discovered by chance during a routine x-ray.

            The second type is spina bifida aperta. Two different lesions are produced by this type, either

a meningocele or a myelomeningocele. A meningocele lesion has meninges, (spinal nerve roots), and

spinal fluid that are protruding through the spine and form a skin covered cyst on the infant’s back

according to Korabek and Cuvo (1986). With this type of lesion the nerves that lead to the lower part

of the body function normally. Surgery is typically required to remove the cyst, but afterward the

newborn will recover and should have no other complications.            
          
            The myleomemingocele lesion is the most severe form of spina bifida. A sac which contains

part of the spinal cord that is not contained within the backbone is protruding through a hole in the


newborn’s back. Several other things may be happening such as spinal fluid leaking, skin not covering

the entire lesion, and/or the area around the lesion may be raw or ulcerated according to Korabek and

Cuvo (1986). This birth defect forms early in pregnancy so some of the major nerves leading to the

area may not have developed and other nerves may have become damaged during the surgery

required to repair the lesion. This causes the possibility that the infant will not be able to move their

lower body or will have trouble controlling their bladder and bowel functions. <>           
           
             Hydrocephalus is a disorder that may occur in infants with myelomemingocele. This is a

disorder in which extra cerebrospinal fluid that normally flows in and around the brain fills or blocks

spaces at the lower portion of the brain that fluid must pass through. A shunt is surgically placed in the

brain to drain this excess fluid. Typically, the fluid is drained into the abdominal cavity. Korabek and

Cuvo (1986) state that if a person is working with a child who has a shunt he or she must be aware of

some of the malfunctioning effects the shunt has such as swelling and/or redness along the shunt tract,

headaches, irritability, vomiting, lethargy, or seizures.

            Specific physical characteristics of spina bifida are evident from birth. Some of these include

orthopedic problems such as dislocated hips and club feet. Throughout a child with spina bifida's first

years a plan will be developed to help that child walk. This can be accomplished with the use of

braces on their legs. The inability of the child to fully empty his or her bladder completely is another

characteristic. Parents will be taught by their child’s physician how to empty their child’s bladder either

manually or by catheterization. This is extremely important because any urine that remains in the child’s

bladder can cause bladder and kidney infections. Crossed eyes and an easy gag reflex are also

common physical characteristics of spina bifida.

There are also educational characteristics concerning a child with spina bifida. The intelligence of these children falls along a wide range from profound retardation to giftedness. Typically the intelligence of a child with spina bifida appears to be normal unless the presence of hydrocephalus has caused some degree of retardation. The child is included in the mainstream classroom whenever possible (Lord, Varzos, Behrman, Wicks, and Wicks, 1990). Speech problems such as “Cocktail Party Syndrome” have been found to affect children with spina bifida as demonstrated by Korabek and Cuvo (1986). This syndrome occurs when a child has a pronounced difference between their ability to make words and to talk coherently. Children who have this syndrome often talk constantly but they don’t think logically about the words that are coming out of their mouths so that they have difficulty making sense.

       
Statistics

            Spina bifida affects people from all races and ethnic backgrounds but is more prevalent in

white infants than all others. In fact, neural tube defects are two to three times more common in white

newborns than black newborns according to Korabek and <>Cuvo (1986). The myelomeningocele

lesion occurs 5 to 10 times more often than the meningocele lesion. Also approximately seventy to

eighty percent of infants with the myelomeningocele defect also develop hydrocephalus because of a

malformation in their lower brain.
            Approximately 8,000 infants with spina bifida are born every year in the United States. This

rate differs according to the child’s country of origin. For example, spina bifida occurs in only 4-5 per

1,000 births in Ireland and less than .1 per 1,000 births in Columbia, South America as noted by

Rowley-Kelly and Reigel (1993). When compared to other cultures, black and Asian infants are rarely

born with spina bifida.          

            No one really knows the direct causes of spina bifida. However several factors seem to be

related such as race, malnutrition, and poverty. The dietary supplement folic acid seems to protect the

unborn fetus from neural tube defects (Tew,1987). There also seems to be a family tendency or

predisposition to the disorder. Rowley-Kelly and Reigel (1993) state that if one sibling has spina bifida

then the chances of a subsequent sibling having it increases by about five percent. If two siblings have

spina bifida then the chances of a subsequent sibling having it are increased to about twelve to fifteen

percent.

Classroom and Treatment Issues

            Typically, children with spina bifida start school at the age of three years old with other

students with disabilities (Tew, 1978). IDEA or the Individuals with Disabilities Education Act has

made sure that all school buildings are accessible to  <>students with physical disabilities. Turnbull,

Turnbull, Shank, and Smith (2004) state that historically many students with spina bifida have been

educated in segregated schools; however the research available has found that they do well when

placed in the least restrictive classroom possible with their peers who do not have a disability and

IDEA has made this the law. According to Korabek and Cuvo (1986), teachers tend to focus on

teaching self-care, motor skills, and sometimes the reduction of self-injurious behavior as well as the

academic curriculum. Teachers also must be aware of some of the medical problems that will possibly

affect the children in their classroom who have spina bifida. Among these problems are lower limb

paralysis and possible bowel and bladder incontinence.    

Medical Issues in the Classroom

            Self-care skills can be taught by the teacher in the classroom to help the child with spina bifida.

One aspect of self-care for these children is to check their bodies for injuries such as sores or pressure

areas. This is important because children with spina bifida have a loss of skin sensation below the

spinal defect and therefore they may have sustained an injury of which they are not even aware.

Korabek and Cuvo (1986) state that establishing a daily routine in which positive reinforcement is

used is one effective way to teach children with spina bifida this important skill.

           
Muscle weakness below the spinal lesion affects the child with spina bifida in many ways

including making it difficult to perform self-care skills. The muscle weakness can be more or less

severe depending on where the lesion is located (Laurence and Beresford, 1976). Korabek and Cuvo

(1986) describe that when the lesion is located in the neck or upper back there is usually less paralysis

in the lower extremities and legs. The bladder may also function normally. If the myelomeningocele

lesion occurs in the high lumbar area which is between the ribs and pelvis around the twelfth thoracic

vertebrae the damage usually involves some degree of paralysis of the lower trunk and thighs.

However, when the lesion is in the lower lumbar region at the level of the third or fourth lumbar

vertebrae, this will normally result in the paralysis of the legs, feet, and ankles as well as a loss of

bladder control. If the lesion is at the lowest part of the back children may not have any leg paralysis

but may have a lack of bladder control. To combat the effects of the muscle weakness, physical and

occupational therapists often work to build the upper body strength of these children. This enables the

children to be more effective in their daily living skills and activities (Korabek and Cuvo,

1986).            
            Another issue that teachers often focus on is the bowel and bladder incontinence of children

with spina bifida. Korabek and Cuvo (1986) note that almost all children with spina bifida have some

degree of bowel or bladder incontinence. Teachers who do not understand the medical reasons behind

the malfunction often spend a great deal of wasted time trying to toilet train these students. The

muscles of the bowel and bladder walls of these children are weak. This results in the child having the

inability to control when they will release the contents of their bowel and bladder. Sometimes they also

have a lack of sensation that would normally tell them when they have to go. Korabek and Cuvo

(1986) state that teachers who understand these medical reasons find it more effective to habit train

students. This is when the students learn to go to the restroom at regular intervals rather that relying on

their body to tell them when they have to go.   

            Teachers must learn how to catheterize their students with spina bifida in some cases since

having anything remaining in the bowel or bladder can cause infections. The students with spina bifida

can be taught self-catheterization as part of their self care skills (Rowley-Kelly and Reigel, 1993).

They must also learn the proper methods to care for the catheterization equipment. The school nurse,

the child’s doctor, and even the child’s parents can be resources for the teacher in this area.

            Kalucy, Bower, and Stanley (1996) found that the fine and gross motor skills of a child with spina bifida will be affected as well. Teachers should be aware of the students’ need for crutches or other walking apparatus. The teacher can assist in the improvement of the children’s walking ability by promoting and encouraging their independent walking. Fine motor skills can be addressed as well. The child’s physical therapist can recommend activities, such as joining in floor time and physical education, that are especially helpful in improving the child’s motor skills discussed Strohkendl and Schule (1978). Then the teacher can incorporate these activities into the classroom. These activities can be used with all students which promotes a full inclusion model and ultimately benefits all the students noted Turnbull, Turnbull, Shank, and Smith (2004). When peers with and without disabilities work together at the same activities an awareness and understanding of disabilities can be established.

           Korabek and Cuvo (1986) demonstrate that children with spina bifida are also prone to

self-injurious behavior due to their lack of skin sensation. Although more likely in younger children

before they enter school, some school age students may stillunknowingly injure themselves. One

common way this occurs is that a child may bite on themselves, for instance their fingers, when they

are teething. Their loss of skin sensation does not enable them to feel any pain and therefore they may

inadvertently cause tissue damage. Parents or teachers may be inclined to respond with inappropriate

attention  which in turn may increase the problem behavior. A more effective treatment procedure

might be to interrupt the child’s behavior or responses (e.g., take child’s hand down from his or her

mouth) and use a mild verbal reprimand (e.g., “No biting.”). The child is then able to respond to

positive reinforcement of the incompatible behavior (Korabek and Cuvo, 1986). Parents and teachers

should be sure that the attention they providefor not biting is much more than the limited attention they

typically will provide when a child stops performing the problem behavior.

Social and Emotional Issues

             There are various social and emotional factors that enter into the classroom when a teacher is

working with a child with spina bifida. The teacher must be aware of learned helplessness. This occurs

when the child expects someone else to do their work for them even though they are fully capable of

doing it or learning how to do it by themselves. Turnbull, et al., (2004) state that a student with learned

helplessness attributes his or her successes to luck and think that when they fail at something that they

are not capable. Learned helplessness can be associated with school work, communication, and/or

socialization. Rowley-Kelly and Reigel (1993) say that to treat learned helplessness the teacher can

acknowledge the child’s progress in other areas, help the student find ways to contribute in the

classroom and with peers, encourage the student to employ the skills they are learning, and to make

sure the student is included in as many activities as possible in which they can fully participate. <>

            Medical noncompliance is a way for some children with spina bifida to maintain some degree

of control over their life and all the medical interventions therein. Other students may simply engage in

noncompliance for reasons of forgetfulness or not wanting to take time away from what they are doing.

The most common way a student exhibits medical noncompliance is with their catheterization

schedules as noted by Rowley-Kelly and Reigel (1993). Teachers should make it clear to the student

what is expected. Also the teacher should encourage the students when he or she does comply

appropriately.

Social acceptance and disability awareness are important for teachers to understand and address in the classroom. Children with physical disabilities are simply not able to participate in many activities (Lauder, Kanthor, Myers, and Resnick, 1979). This lack of opportunity to socialize with peers is often made worse by the tendency of non-disabled peers to reject or ignore the child with disabilities as stated by Rowley-Kelly and Reigel (1993). Children with physical disabilities or minor physical anomalies tend to be rejected or to be unpopular. Since many students with spina bifida have learning disabilities, it is worth noting the finding that students with learning disabilities also tend to be less popular (Rowley-Kelly and Reigel, 1993). To increase social acceptance teachers can use a full inclusion model in their classrooms. This allows the students with spina bifida to be in class with their peers who do not have spina bifida (Halliwell and Spain, 1977). In this setting disability awareness is most effectively discussed. Teachers should aim for the goal that all students in their class understand what spona bifida is and how it affects those who have it. Another goal for teachers to encourage is that students with and without spina bifida are enjoying friendships with one another.

           A key for the successful education of a child with spina bifida is a strong parent-teacher

relationship. Rowley-Kelly and Reigel (1993) state that it has been shown that student’s achievement

scores rise, student attendance increases, student motivation and self-esteem improve, discipline

problems decrease, the dropout rate declines, and parental perception of the school is enhanced when

parents are involved in their child’s education. All of these things are very important for a child with

spina bifida. Also most parents of a child with spina bifida have been very protective and involved with

their children up to the point at which they entered school and these parents will want to remain

involved. In order to establish a good parent-teacher partnership, parents and professionals alike must

be willing to reflect, share, understand, and confront the attitudes and beliefs or values they hold

(Rowley-Kelly and Reigel, 1993). Two values that are essential to a good relationship are that there is

no one to blame for the child’s disability and that the relationship between parents and teachers is

worthwhile and important. Effective listening and collaborative negotiating skills are used to build these

relationships and make them work.

            There is much information available about spina bifida. However, the majority of that information is somewhat dated. The most current information is found through websites. Here are several websites that are good resources.



Related Websites

Spina Bifida Association of America

www.sbaa.org/

 

Children with Spina Bifida: A Resource Page for Parents

www.waisman.wisc.edu/~rowley/sb-kids/

 

Association for Spina Bifida and Hydrocephalus

www.asbah.org/



References

References

Halliwell, M.D. & Spain, B. (1977). Spina bifida children in ordinary schools. Child

Care, Health & Development, 3, 389-405.

Kalucy, M., Bower, C., & Stanley, F. (1996). School-aged children with spina bifida in

Western Australia – Parental perspectives on functional outcome. Developmental Medicine and Child Neurology, 38, 325-334.

Korabek, C.A., & Cuvo, A.J. (1986). Children with spina bifida: Educational

implications of their medical characteristics. Education and Treatment of Children, 9(2), 142-152.

Lauder, C.E., Kanthor, H., Myers, G., & Resnick, J. (1979). Educational placement of

children with spina bifida. Exceptional Children, 45, 432-437.

Laurence, K.M. & Beresford, A. (1976). Degree of physical handicap, education, and

occupation of 51 adults with spina bifida. British Journal of Preventive & Social Medicine, 30, 197-202.

Lord, J., Varzos, N., Behrman, B., Wicks, J., & Wicks D. (1990). Implications of

mainstream classrooms for adolescents with spina bifida. Developmental

Medicine and Child Neurology, 32, 20-29.

Rowley-Kelly, F.L., & Reigel, D.H. (Eds.). (1993). Teaching the student with spina

bifida. Baltimore, MD, England: Paul H. Brookes Publishing.

Strohkendl, H. & Schule, K. (1978). Physical education for spina bifida children in

            <>special schools for the physically handicapped. International Journal of Rehabilitation

            Research
, 1, 39-58.
        

Tew, B. (1978). Differences in reading achievement between spina bifida children

attending normal schools and those attending special schools. Child Care, Health, & Develoment, 4, 317-326.

Tew, B. (1987). Changes in medical practice towards the child with spina bifida:

implications for schools. Disability, Handicap & Society, 2, 85-99.

Turnbull, R., Turnbull, A., Shank, M., & Smith, S. (2004). Exceptional Lives Special

Education in Today’s Schools. Upper Saddle River, NJ: Pearson.

 





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