Spina bifida is a birth defect in which the vertebral column is open, often with spinal cord involvement. The most clinically significant subtype is myelomeningocele (open spina bifida), which is a condition characterized by failure of the lumbosacral spinal neural tube to close during embryonic development. The exposed neural tissue degenerates in utero, resulting in a neurological deficit that varies with the level of the lesion. Occurring in approximately 1 per 1,000 births worldwide, myelomeningocele is one of the most common congenital malformations, but its cause is largely unknown
Copp, A. J., Adzick, N. S., Chitty, L. S., Fletcher, J. M., Holmbeck, G. N., & Shaw, G. M. (2015).
Occulta: The mildest and most common form in which one or more bones of the spinal column (vertebrae) are malformed. The name “occulta,” which means “hidden,” indicates that a layer of skin covers the opening in the bones of the spine. It usually shows no symptoms and is often found by accident on an x-ray or similar test.
Closed neural tube defects: These are a diverse group of disorders in which the spine may have malformations of fat, bone, or the membranes (the meninges) that cover the spinal cord. Many of these neural tube defects require surgery in childhood. People with this type of spina bifida may have weakness of the legs and trouble with bowel and bladder control. These issues may change or progress as children grow. It is important to have close communication with doctors to minimize these changes as much as possible.
Meningocele: Occurs when the meninges protrude through the spine and cause a sac of spinal fluid on the back. This fluid is typically only around the brain and spine, but a problem with the bony covering over the spine allows it to poke out. The malformation contains no nerves and may or may not be covered by a layer of skin. Individuals with meningocele may have minor symptoms.
Myelomeningocele: The most severe form of spina bifida. A portion of the spinal cord or nerves are exposed in a sac through an opening in the spine that may or may not be covered by the meninges. The opening can be closed surgically while the baby is in utero or shortly after the baby is born. Most people with myelomeningocele experience changes in brain structure, leg weakness, and bladder and bowel dysfunction.
Myelomeningocele is often called a "snowflake condition" because no two people with the condition are the same. Typically, if the opening in the spine is lower down the back, the person will experience less symptoms. People with myelomeningocele require close follow-up with physicians throughout their childhood and lifespan to maximize their function and prevent complications like kidney failure.
Spina bifida. (n.d.). National Institute of Neurological Disorders and Stroke.
Mobility and Physical Activity: Children affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches, or walkers; and using wheelchairs.
Using the Bathroom: Children with spina bifida often cannot control when they go to the bathroom (incontinence). They also can develop urinary tract infections. It is important to develop a plan for going to the bathroom that works and is as simple as possible. This can lead to increased health, participation, and independence at school and in the home, and avoid embarrassment for children with spina bifida. Healthcare providers can help develop a plan for the child. A tube (catheter) inserted in the child’s bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular.
Many people with Spina Bifida — of all ages — have executive dysfunction. As a result, they process information differently than those without executive dysfunction and struggle with planning, problem-solving, organization, and time management.
Living with spina bifida: School-Aged Children | CDC. (2023, October 4)
Learning with Executive Dysfunction - Spina Bifida Association. (2021, April 27)
Spina bifida can affect the part of the brain that controls executive functioning, so some students may find it difficult to plan, organise and recall details. To support students to remain focused and on task, break tasks into small manageable chunks and check for understanding before moving onto the next activity. Additionally, providing a checklist or a tick box, may assist the student to remember what they need to do for that lesson.
Build breaks into your daily routine that involve age-appropriate movement – for example, rocking, rolling or marching for younger students and mindfulness practices for the older students.
Writing can be challenging for students with spina bifida as the condition may affect fine motor skills. Allowing students more time to complete a task when the focus is on handwriting is one adjustment. Further adjustments include the use of assistive technology. When writing is not the core skill being learnt, modify the work so that the student with spina bifida is required to do less handwriting but is provided with an alternative way to demonstrate their learning. These may include tasks that can be completed via a computer, an app, or another alternative technology. The development of a student’s fine motor skills may also be supported through creative pursuits that are age appropriate such as sewing, knitting or threading,
Adjust the physical space in the classroom, in consultation with an OT, to suit the mobility needs of the student with spina bifida – whether they are using an electric wheelchair or other mobility aides. Ensure there’s easy access in and out of the room and building. Inside the classroom, make sure surfaces are flat, there are no trip hazards, and provide the student with a height adjustable desk to accommodate their wheelchair as needed.
Students with spina bifida are at risk of developing injuries as they may not have full sensation in their lower body. Reduce the risk of students being harmed by doing a risk assessment of the different environments in which the student learns, particularly during outdoor activities, by ensuring they always wear shoes and socks. Remind students to avoid sitting on hot surfaces such as metal seats, which may cause burns.
Families of students with SB, when interviewed stated Attitude of education professionals, and coordination were key factors.
Empathy. Willingness to do more things than what is in their contract
Friendly, understanding, respectful, responsible and mature
Three pillars working together at school: parents, teachers and pupils
Classroom adjustments: Spina bifida - Nationally Consistent Collection of Data.
In the US, 1,500 children are diagnosed with spina bifida every year
Spina bifida is typically diagnosed by routine ultrasound between 16 and 18 weeks into pregnancy
In some cases, spina bifida can be treated when the baby is still in the mother's womb
https://www.chop.edu/health-resources/facts-about-spina-bifida-infographic
Copp, A. J., Adzick, N. S., Chitty, L. S., Fletcher, J. M., Holmbeck, G. N., & Shaw, G. M. (2015). Spina bifida. Nature Reviews. Disease Primers, 1(1), 15007–15007. https://doi.org/10.1038/nrdp.2015.7
Spina bifida. (n.d.). National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/spina-bifida#:~:text=There%20are%20four%20types%20of,serious%20cases%20involve%20nerve%20damage.
Living with spina bifida: School-Aged Children | CDC. (2023, October 4). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/spinabifida/school-age.html
Learning with Executive Dysfunction - Spina Bifida Association. (2021, April 27). Spina Bifida Association. https://www.spinabifidaassociation.org/resource/learning-with-executive-dysfunction/#:~:text=Many%20people%20with%20Spina%20Bifida,%2C%20organization%2C%20and%20time%20management.
Classroom adjustments: Spina bifida - Nationally Consistent Collection of Data. (n.d.). https://www.nccd.edu.au/professional-learning/classroom-adjustments-spina-bifida