Special Health Care Needs

Introductions to Spina Bifida:                                           

                                                                                                                                                                    

                                                                                                                 

My true story of a family member living with Spina Bifida.

 

I chose spina bifida because I have personal experience with this disease. My nephew, who is only ten years younger than me has lived with it all his life. For as long as I can remember I viewed him as a bright boy, even though he had a disability. I did not see him with a disability because there wasn’t much he could not do. He was born with club feet and eventually he even needed a wheel chair. When I was little I remember playing with him just like a normal kid would. Even though he had many appointments it never changed who he was or the way I thought of him. As I got older, I automatically thought ahead to accommodate him with modifications, so that he could be as independent as possible. For example, when we put in our front cement walkway/steps we made a ramp for wheelchairs. We tried not to give him special treatment, as he did not want it and we all carried on with the adjustments like they were a normal part of our lives. I think my nephew was fortunate because to this day he is totally capable of functioning on his own in his house, driving, playing basketball and pool and traveling. In the last couple of years he received his real estate licence. At one time he had a chance to walk again by having surgery on his back, but he would be bed ridden for a year. He turned it down. I never understood why. As years go by I realize this was his decision, even though I would have done it in a heartbeat. His decided to carry on his life as he knew it.       

 

Definition

 

Spina bifida is a congenital midline defect of the spinal column. Technically, the term spina bifida refers to a defect in the bony arch of the vertebrae protecting the spinal cord.  In the early weeks of the pregnancy the neural tube of the embryo fails to develop normally.  The bony arch of one or more spinal vertebrae do not fuse to protect the spinal cord, which leaves part of the nerve fibres of the cord exposed.  The spinal defect may be found anywhere between the skull and the lowest segments of the vertebrae.  Generally, spina bifida is evident by the end of the fourth week of gestation, and the severity of the problem is apparent at birth. 

 There are three types of spina bifida, which vary according to the severity of the malformation:

       myelomeningocele: the most severe form; both the spinal cord and its lining (the meninges) protrude from an opening in the spine

    

       meningocele: only the lining protrudes

      
       spina bifida occulta: the mildest form; there is a breach in the spinal vertebrae but it's covered by skin

 These malformations are usually in the lower back or at the level of the hips.

 

Prevalence

 The prevalence of spina bifida varies widely from country to country, area to area, and even within the limits of a particular city.  Worldwide, spina bifida occurs in 0.1 to 4.13 per 1000 live births.  The incidence in Ireland is about 4 or 5 children per 1000 live births, while in parts of Nigeria it is 0.2 per 1000 live births.  In Canada, the highest rate of spina bifida is found in Newfoundland and Labrador.  There is a slight tendency for the condition to run in the families.  If one baby is born with spina bifida, there is a 4 to 5 percent chance of siblings having the same defect. 

        
 

Etiology

 Although the process is understood, the actual cause of spina bifida is unknown.   

It is believed that both heredity and environment are interweaving factors. 

 Assessment

 

Spina bifida can be detected prenatally by a test that looks at a level of alpha-fetoprotein in the mother’s blood.  Higher concentrations than usual indicate the necessity for ultrasounds or fetoscopy. Most people with spina bifida have some degree of paralysis, usually in the lower body, and may need wheelchairs or other aids to get around. The nature of the paralysis depends on the location and severity of the lesion in the spine. Some people with mild spina bifida occulta experience no physical problems at all. There may well be people with this condition who have never been diagnosed and will never suffer any ill effects.

 

Developmental Consequences

 

Children with myelomeningocele suffer neurological damage that interferes with growth and development.  The most obvious neurological damage is the flaccid paralysis (inability to move the muscles) of the lower part of the body, which makes braces, crutches, walkers, or a wheelchair necessary.  Children may lack sensation and control of their bladder and bowel sphincters.  Incontinence in itself does not create learning difficulties, but it may create social and psychological barriers for children in school.  Typical children usually view incontinence as a sign of immaturity or infantile behaviour and react accordingly.  As incontinent children mature, they learn to cope with the condition.  Using a procedure called clean intermittent catheterization, they catheterize themselves every three or four hours. 

  

Interventions

 

Women can reduce their chances of having a child with spina bifida. When a woman is thinking of getting pregnant, she should immediately start taking 0.4 mg of Folic Acid daily. Folic acid is the most important of all the vitamins for a healthy pregnancy. Most people with spina bifida reach adulthood, but few live to a ripe old age. Treatments have improved dramatically since 20 or 30 years ago, when spina bifida was usually fatal in childhood. Although the quality of life for people with spina bifida is better now, a real cure for this condition still seems a very long way off.  Prevention remains the key

Surgery is possible immediately after birth or even while the baby is in the uterus.

However, it is risky for the mother and the baby if attempted prenatally, and will not fully restore muscle function.

 Physical therapy helps with strengthening and stretching muscles, as well as improving independent mobility and enabling certain positions.

 

Educational Implications

 

When attending school with spina bifida there are many different needs to be met.  Starting with accessibility – it is important that students can access buildings and get around from class to class easily, and have the space to move freely around the classroom. Most students with spina bifida are physically less coordinated then regular students when it comes to gym and other activities. However, a modified curriculum for physical education allows a student to be included, participate with their peers and benefit from exercise. Socially is it challenging trying to make friends with establish equal and positive relationships with peers that may not understand your disability.  Emotionally it is difficult because you know you are different. Many years ago the school setting was so different-children with spina bifida may not have been allowed in regular school, and inclusion was not a key consideration in education. Now there is much more education and understanding about spina bifida-there is no reason or excuse for the isolation and negative experience that students may have experienced in the past. Examples of support for students with spina bifida include having classroom discussions about the isolation and negative comments, and increase feelings of inclusion in the class.

                                                                       

Conclusion                                                        

 Like most aspects of spina bifida, attending school can be complicated. There are a number of issues to consider. It is especially important for families to understand the options available to them and their child. This can mean learning a whole new set of information related to special education law. But there are a number of resources to help you with this process.

 

Here is a blog to post information on web site updates, news articles, medical studies, etc. You can view it here:

http://spinabifida-news.blogspot.com

 

The new Spina Bifida Research Blog is located here:
http://spina-bifida-bibliography.blogspot.com

References

The above web sites and Winzer, M. (2008) ‘Children with Exceptionalities in Canadian Classrooms’, 8^th Edition, Person Prentice Hall, Toronto

 

http://www.youtube.com/watch?v=6Y8uz5i5Asg&feature=player_embedded