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Spina Bifida


What Is Spina Bifida?

Spina bifida is a neurological disorder that results from a birth defect that occurs in the first month of pregnancy. Approximately 70,000 people live with the disease in the United States. Symptoms of spina bifida may include partial to full paralysis, hydrocephalus, bowel and bladder control issues, learning disabilities, and latex allergies. There are three types of spina bifida:

  • Occulta: Usually presents with none of the symptoms listed above and tends to be harmless.

  • Meningocele: Children may develop minor disabilities and defects can usually be repaired with surgery.

  • Myelomeningocele: Most severe form of spina bifida which usually requires surgery 24-48 hours after birth. Up to 90% of those with this type of spina bifida have hydrocephalus or “fluid on the brain”. A shunt, or tube, must be inserted to drain the fluid and is permanent.

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What Causes Spina Bifida?

A number of maternal risk factors have been identified. These include a previous pregnancy involving spina bifida, insulin-dependent diabetes, use of specific anti-seizure medications, medically-diagnosed obesity, exposure to high temperatures during pregnancy (prolonged fever, hot tub use), and B vitamin folic acid deficiency prior to pregnancy. It is recommended that women take a multivitamin containing 400 micrograms of folic acid daily in addition to eating foods rich in folic acids (oranges/orange juice, leafy green vegetables, beans, and whole-grain products).

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How Is Spina Bifida Treated?

  • Physical Therapy
    While attending physical therapy, your child will participate in activities that improve their ability to function in daily life. Depending upon your child’s disabilities, therapy may include stretching, sitting, standing, and walking exercises that focus on strengthening, balance, coordination, and performance of daily functional activities. Children may also be trained in use of assistive and adaptive equipment (such as wheelchairs, walkers, and home modifications) and orthodox care (including bracing, such as AFOs, SMOs, etc.). It is essential that caregivers comply with the home exercise program established by a therapist.

  • Occupational Therapy
    Occupational therapy focuses on the development of self-care skills and functional independence, improvement of arm and hand strength and coordination, and need for and use of splints/braces, in addition to providing equipment recommendations.

  • Speech Therapy
    The child’s language and articulation skills will be assessed in speech therapy. Therapy goals and activities are developed based upon how the child understands language, uses language, and how clear his or her speech is. Swallowing skills are assessed as needed.

In addition to physical, occupational, and speech therapy, activities may include:

 

  • medical procedures

  • Family support services

  • Assistive technology

  • Orthotics

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What to Expect When Your Child Is Diagnosed with Spina Bifida

Spina bifida is a non-progressive disorder; therefore, it does not worsen over time. It is important that parents/caregivers understand their child’s physical capabilities and limitations. Children should be encouraged to be as independent as possible and to participate in activities with their non-disabled peers. It is also critical for a parent/caregiver to work with the healthcare team to develop realistic goals for their child to help them obtain their optimal level of function.

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Where can a parent get help?

If you have a concern about this diagnosis regarding your child, please contact your pediatrician. If your child’s doctor feels treatment is necessary, FAC’s physical therapists have extensive training in this area. Your physician can write out a prescription for evaluation and treatment, which can be faxed to our clinic:

651-738-9889.

 

Should you have any additional questions or concerns, please contact our front desk and ask to speak with a therapist.

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Links to additional information about Spina Bifida

  • Online

  • Books

    • The Everything Parent’s Guide to Children with Spina Bifida: Know What to Expect, Find the Help You Need, and Get Through the Day by Adelle Jameson Tilton

    • Children with Spina Bifida: A Parent’s Guide by Marlene Lutkenhoff

  • Camp Courage
    Camps for children with physical disabilities and clinical camps for children with speech/ hearing/ language impairments 763-520-0504

  • Friendship Ventures (Camp friendship and Eden Wood Center)
    Friendship Venture’s two camps provide residential camping program for children and adults with developmental disabilities 1-800-450-8376

  • Camp Winnebago
    Camps for children with developmental disabilities, siblings, and friends 507-724-2351

  • Camp New Hope
    A camp for individuals with developmental and/ or physical disabilities ages 6 and older.

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