1. Understanding Spina Bifida
Liam Bennett
Matthew Colbert
Michael Dyke
Danielle McGettigan
Jenelle Penney
Alexa Thorne

2. Outline: Introduction to Spina Bifida
What is Spina Bifida?
Prevalence
Types of Spina Bifida
Spina Bifida Occulta
Spina Bifida Cystica (Meningocele)
Spina Bifida Cystica (Myelomeningocele)
Causes of Spina Bifida
Neural Tube Birth Defect
Heredity and Environment
Signs and Symptoms
Diagnosis
Treatment

3. Outline: Students with Spina Bifida
General Information
Evaluation
Impact on School Life
Learning Problems
Emotional Independence
Implications
Planning and Awareness
Instruction
Social and Emotional Well-Being

4. Introduction to spina bifida

5. What is Spina Bifida?
Spina bifida is Latin for “split spine”

6. What is Spina Bifida? A developmental congenital disorder
existing at birth
A developmental congenital disorder
Caused by incomplete closing of the embryonic neural tube

7. What is Spina Bifida?
Vertebrae overlying the spinal cord are not fully formed
These vertebrae remain unfused and open
If this opening is large enough, a portion of the spinal cord may protrude

8. What is Spina Bifida? The child’s spinal cord does not form properly
Spina bifida sometimes makes it difficult for the child to walk or carry on with daily activities

9. Prevalence
Spina bifida is one of the most common birth defects with a worldwide incidence of about 1-2 in every 1000 births
More common in girls
90% of those affected live an average life span

10. Types of Spina Bifida
Spina bifida malformations fall into 3 categories:
Spina Bifida Occulta
Spina Bifida Cystica with Meningocele
Spina Bifida Cystica with Myelomeningocele

11. Types of Spina Bifida
Occulta – hidden, common, least severe, asymptomatic usually
Meningocele – cyst present, cyst contains tissue and fluid, little disability
Myelomeningocele – cyst present, cyst contains tissue, fluid, nerves, part of the spinal cord, most severe

12. Spina Bifida Occulta Occulta is Latin for “hidden” Mildest form
Most common form
Asymptomatic in most cases
Splits in the vertebrae are so small that the spinal cord does not protrude
The incidence of spina bifida occulta is approximately 10-20% of the population
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, or a birthmark
This form of spina bifida rarely causes disability or symptoms
It is debated whether or not occulta should be considered a form of spina bifida

13. Spina Bifida Cystica (Meningocele)
Least common form
There is a sac or cyst
This sac contains tissues that cover the spinal cord and cerebrospinal fluid
Nerve damage is minimal
Little disability
In spina bifida cystica there is a sac or cyst (like a blister) on the back, covered by a thin layer of skin. The sac contains tissues that cover the spinal cord, cerebrospinal fluid and sometimes even the nerves and tissues of the spinal cord itself.
There are two forms of spina bifida cystica:
Meningocele
Myelomeningocele
This type exhibits moderate range of deviation in which the protective membrane or tissues surrounding the spinal cord protrude out through a small opening seen in the vertebrae. This can be corrected by surgery without causing any damage to the nervous system or spine.

14. Spina Bifida Cystica (Myelomeningocele)
More common than Meningocele
There is a sac or cyst
This sac contains tissue, fluid, nerves, and part of the spinal cord
Paralysis occurs below the damaged region
Most severe
Spina bifida with myeloschisis is the most severe form of myelomeningocele.
The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction.
Myelomeningocele is more common and more serious than meningocele.

15. Causes of Spina Bifida How Spina bifida develops is well known
However, we are still not entirely sure why it develops
Some possible causes:
Neural Tube Birth Defect
Heredity and Environment

16. Neural Tube Birth Defect
The neural tube may fail to close
This happens during the first month of embryonic development
often before the mother knows she is pregnant

17. Neural Tube Birth Defect
Drugs like valporic acid and anticonvulsants may cause the neural tube defects during pregnancy
Increased body temperature during the first trimester of pregnancy may also cause neural tube defects
Fever
Use of hot tubs
Use of electric blankets

18. Neural Tube Birth Defect
Research has shown the lack of folic acid (folate) is a contributing factor to the pathogenesis of neural tube defects, including spina bifida
Adding folate to a mother’s diet can reduce the incidence of neural tube defects by about 70%
It is unknown how or why folic acid has this effect

19. Heredity and Environment
Spina bifida, like cancer and hypertension, likely result from the interaction of multiple genes and environmental factors
Women who are obese are more vulnerable to give birth to a child with spina bifida
Women who are diabetic are also more vulnerable to give birth to a child with spina bifida

20. Heredity and Environment
Spina bifida is common certain races like Hispanics and Caucasians
Women who have given birth to one child with spina bifida have an increased risk of having another child with spina bifida

21. Animation WHAT IS SPINA BIFIDA?
Note: The video mentions that Myelomeningocele is the most common form of Spina Bifida. It is the most common form of spina bifida cystica, however it is not as common as occulta. However, it is debated whether or not occulta should be considered a type of spina bifida

22. Signs and Symptoms
Complications can range from minor physical problems to severe physical and mental disabilities
Many people with spina bifida do not have learning disabilities and score an average IQ score
Although, as we will see further in the presentation, children with spina bifida may have LDs and problems with executive functioning, but it is important not to assume!

23. Signs and Symptoms Physical Complications Leg Weakness and Paralysis
Orthopedic Abnormalities
Bladder and Bowel Control Problems
Skin Irritations
Abnormal Eye Movement
Orthopedic Abnormalities include club foot, hip dislocation, scoliosis
68% of children with spina bifida have an allergy to latex, ranging from mild to life-threatening.

24. Signs and Symptoms Neurological Complications
Arnold Chiari II Malformation
Hydrocephalus
Smaller Cerebellum
Abnormally Developed Corpus Callosum
Arnold Chiari II Malformation - abnormality of the cerebellum
Hydrocephalus – 90% of myelomeningocele cases, flow of cerebrospinal fluid is affected, use of shunt
The corpus callosum is abnormally developed in 70-90% of individuals with spina bifida myelomeningocele

25. Diagnosis Pregnancy Screening Detailed fetal ultrasound
Testing the mother’s blood (AFP screening)
After Birth
A doctor can preform a physical examination
CT and MRI scan can identify the intensity of damage caused to the nerves
Ultrasound screening for spina bifida is partly responsible for the decline in new cases, because many pregnancies are terminated out of fear that a newborn might have a poor future quality of life. With modern medical care, the quality of life of patients has greatly improved.

26. Treatment Treatment depends on the severity of the case
For children with mild defect, no treatment is required
For children with severe defect, surgery is done to correct nerve damage
For children with myelomeningocele, surgery is done immediately after birth to reduce risk of infection
Shunting is done to prevent accumulation of fluid in the brain
During the surgery, the meninges (protruding tissues) are put back in place and the surgeon will close the opening of vertebrae.

27. Treatment
In severe cases of spina bifida children will face problems in walking and carrying out daily activities
Most children who have undergone corrective surgery can walk with the support of braces
Wheelchairs may be needed for covering long distances

28. Students with Spina bifida

29. General Information
The large majority of students with spina bifida are in educational programs within “regular” schools, usually in “regular” classrooms
It is critical that school personnel involved with student with spina bifida be familiar with the condition

30. General Information
Many children with spina bifida have an average ID score
However, some may need early educational intervention to help with learning difficulties (like trouble making decisions)
May also need extra help from teachers and counselors to adapt to school, since physical disabilities may cause emotional and social problems

31. Evaluation
Specific tests are often required by the government in order to obtain special services
Teachers need to identify areas where students with spina bifida have strengths and difficulties
Special testing may be required:
Intelligence testing
Academic testing
Visual motor testing

32. Evaluation
Other tests that may be given to help teachers and counselors learn more about a child’s:
Language ability
Learning skills
Social functioning
Emotion well-being

33. Impact on School Life How Spina Bifida May Affect Executive Function
Specific areas of difficulty in some individuals:
Planning and Organizing
Working Memory
Problem Solving
Cognitive Flexibility
Attention Span
Individuals with spina bifida, especially those with shunted hydrocephalus, often have attention problems. Children with spina bifida and shunted hydrocephalus have higher rates of ADHD than typically developing children (31% vs. 17%)
Attention deficits may be evident at a very early age, as infants with spina bifida lag behind their peers in orienting to faces

34. Impact on School Life How Spina Bifida May Affect Academic Skills
Individuals may struggle with math and reading
60% of children with spina bifida are diagnosed with a learning disability
Early intervention to address mathematics difficulties and associated executive functions is cruical
Individuals with spina bifida tend to have better reading skills than mathematics skills
Children and adults with spina bifida have stronger abilities in reading accuracy than in reading comprehension
Children with Spina Bifida and hydrocephalus often have:
Average IQs. But every child is different. So there can be a broad range of scores on IQ tests among children with Spina Bifida and hydrocephalus—from exceptional performers to those with learning difficulties. Also, health problems may negatively impact performance.
Word skills and IQs that are higher than performance skills.
Poor eye-hand coordination. This can make things like handwriting difficult.
Higher grades in reading and spelling than in math.

35. Impact on School Life How Spina Bifida May Affect Social Interactions
Compared to other children, youths with spina bifida may
have fewer friends
spend less time with peers
be more socially immature
be more passive in social situations
These children have also reported feeling less close to their friends and feel they do not receive as much emotional support from their friendships
Many social difficulties tend to be stable, lasting into adulthood

36. Impact on School Life
Like all children, those with spina bifida often can be put in a range of classes
Parents, educators, health care professionals and sometimes children must work together to choose what is best
This decision can become part of the child’s Individual Education Plan (IEP)

37. Learning Problems
Beyond getting a child into the right classes, there are other decisions to make
If a child has perceptual-motor, inattention, memory or other learning problems, but is in “regular” classes, teachers will often see these problems and will work with the parents and children
The parent can ask that these problems be addressed in the IEP.

38. Emotional Independence
Like all kids, children with spina bifida may try to avoid schoolwork, chores, or personal care (which is normal)
However, some children with spina bifida may become too dependent on parents or teachers
Parents and teachers should be aware of this and help children achieve emotional independence
It is common for parents often hear from schools that their children aren’t doing well because they are too dependent on the parents. Children with Spina Bifida, like all kids, may try to avoid of schoolwork, chores or personal care – which is normal. However, some children with Spina Bifida and hydrocephalus can become too dependent on parents or others for things that they can do for themselves. Parents should be able to acknowledge this so they can help their children achieve emotional independence. It is important that educators take note of this so the child can achieve success. By doing too much for them or by thinking that they cannot do any better, the teacher can be discouraging them from reaching their independence.

39. Implications Implications for Planning and Awareness
Meet with the student and parents early in the school year
Develop a written management plan
If the student is taking medications discuss the side effects
Learn from parents whether the student has a shunt

40. Implications Implications for Instruction
Be aware that students with severe spina bifida may have numerous absences due to medical appointments
Determine a student’s particular strengths and needs
Provide adapted tools and materials
Provide additional time for transitions between classes
Provide close supervision during physical activities
Provide adapted tools and materials, such as slant boards, adapted writing paper and pencils and specialized computer software, if weakness in the arms and hands make writing difficult.

41. Implications Implications for Social and Emotional Well-Being
Engage the student and parents in planning for transitions between grade levels and different schools
Consider having a "key person" the student can check in with on a weekly (or daily basis)
Provide emotional and social support in a matter-of-fact way
Take steps to ensure the student does not feel left out during recess, intramural or other school activities

42. References http://kidshealth.org/parent/system/ill/spina_bifida.html