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    Move Forward Guide

    Physical Therapist's Guide to Spina Bifida

    Spina bifida is a birth defect that develops when an infant's spinal cord does not completely close during the early stages of the mother's pregnancy. Spina bifida is diagnosed in approximately 1,500 babies born in the United States each year. The birth defect may cause both physical and intellectual disabilities.


     

    What is Spina Bifida?

    Spina bifida is a birth defect involving the spine that occurs when a baby's "neural tube," or fetal spinal cord, does not completely close in the early stages of development during the first month of a mother's pregnancy. When the neural t'ube does not close, the bones of the spine that protect the spinal cord do not form as they should. Spina bifida can occur anywhere along the spine, and often results in damage to the spinal cord and surrounding nerves.

    Signs and Symptoms

    Spina bifida may cause both physical and intellectual disabilities that range from mild to severe. The severity of disability depends on the size and location of the opening in the spine, and the extent to which the spinal cord and nerves are affected.

    • Babies born with spina bifida often cannot move their legs due to weakness or paralysis resulting from spinal cord and nerve damage.
    • People with spina bifida may have problems controlling their bowel and bladder, skin problems, orthopedic concerns, learning disabilities, problems with attention, or other neurological complications.
     

    Signs and Symptoms

    Signs and Symptoms

    Spina bifida may cause both physical and intellectual disabilities that range from mild to severe. The severity of disability depends on the size and location of the opening in the spine, and the extent to which the spinal cord and nerves are affected.

    • Babies born with spina bifida often cannot move their legs due to weakness or paralysis resulting from spinal cord and nerve damage.
    • People with spina bifida may have problems controlling their bowel and bladder, skin problems, orthopedic concerns, learning disabilities, problems with attention, or other neurological complications.
     

    How Is It Diagnosed?

    Spina bifida is often diagnosed during the mother's pregnancy through ultrasound, amniocentesis, or the AFP test (maternal serum alpha-fetoprotein test). Diagnosis often occurs by 16 to 18 weeks of pregnancy. However, if the spinal opening is small, the condition may not be diagnosed until birth.

    Symptoms vary based on the type of spina bifida that has developed. The classifications are:

    • Occult Spinal Dysraphism (OSD). Infants with OSD may have a dimple and red marks on the lower back, with tufts of hair or small lumps, but usually the spinal defect is minor and the symptoms involve the skin and the tissue below the skin. However, if some nerves are included in the defect, then OSD may result in problems as children grow and those nerves are stretched.
    • Spina Bifida Occulta (SBO). This type of Spina Bifida is often called "hidden" because the defect is not visible by examining the back. People with SBO have a small defect or gap in a few of the spinal vertebrae. The spinal cord and nerves are usually normal with no opening on the back. SBO occurs in about 15% of the population, but usually does not cause any symptoms. However, some people with SBO may experience neurological symptoms if some of the nerves are in the bony defect. As a child grows, the spinal cord, which usually hangs unattached in the spine, is pulled with growth because of the point of attachment. This pulling of the spinal cord is called a "tethered cord," which requires examination by a neurosurgeon.
    • Meningocele. This condition develops when the protective coatings of the spinal cord, or meninges, protrude through the open part of the spine in a sac that usually contains only cerebrospinal fluid. Nerve damage is not common with this condition. Minor disabilities may be present, and additional problems may develop later in life.
    • Myelomeningocele. This type is the most severe form of spina bifida, and is also known as myelodysplasia. The meninges and spinal nerves protrude through the opening of the spine. Nerve damage and more severe disabilities occur with this condition. A full 70% to 90% of children with myelomeningocele also have hydrocephalus—too much fluid in the brain—which causes pressure and swelling. Hydrocephalus often requires surgery to drain the excess fluid. Problems with motor control, learning, and mobility may occur.
     

    How Can a Physical Therapist Help?

    The physical therapist is an important partner in health care and fitness for anyone diagnosed with spina bifida. Physical therapists help children and adults with spina bifida gain and maintain mobility, and function at their best throughout all stages of life. The physical therapist will also work with other health care professionals, such as orthopedists and occupational therapists, to address each individual's needs as treatment priorities shift.

    Your child's physical therapist will perform an evaluation that includes:

    • Birth and developmental history. The physical therapist will ask questions about the child's birth and developmental stages (the age your child held the head upright, rolled over, sat up, crawled, walked, etc).
    • General health questions. The physical therapist may ask some of the following questions: Has your child been sick or hospitalized? When did your child last visit a physician or health care provider? Were any health concerns shared with you during that visit?
    • Parental concerns. The physical therapist will ask about your chief concerns. What are you worried about? What do you hope to accomplish first in therapy?
    • Physical examination. The physical exam may include measuring the child's height and weight; observing movement patterns; making a hands-on assessment of muscle strength, tone, and flexibility; and testing the child's balance and coordination.
    • Motor development tests. The physical therapist will perform specific tests to determine the child's motor development, such as sitting, crawling, pulling up to standing, and walking. The physical therapist also may screen the child's hand use, vision, language skills, intellect, and other areas of development.
    • Referrals. The physical therapist may refer the child to other health care professionals, who can participate in a team effort to address your child’s needs.

    Physical therapy may be provided in a variety of locations, including the hospital, home, school, or outpatient clinics. 

    • Physical therapists in the intensive care unit address infant positioning needs and provide parent and family education.
    • Early-intervention physical therapists can provide physical therapy in the home or other community-based locations to help encourage the child's development of strength, movement, and balance skills by teaching parents specific play-based exercises.
    • School-based physical therapists often consult with other educational team members to help students with spina bifida participate in curricular activities, and develop independence within the school setting. They may recommend special equipment for the student to use during the school day.
    • Physical therapists also recommend appropriate equipment, such as braces, walkers, and wheelchairs to help people with spina bifida increase their functional mobility. 
    • Physical therapy is also important for the prevention of other possible problems, such as obesity, by identifying activities that encourage continued participation in sports or other fitness-based activities that promote lifelong health and wellness.
     

    Real Life Experiences

    Daniel was diagnosed with spina bifida (myelmeningocele) when his mother was 5 months pregnant. When Daniel was born, his meninges and spinal nerves were protruding through an opening in his spine. He had surgery the day after he was born to close the opening and reposition the sac. Daniel was also diagnosed with hydrocephalus at birth, and had another surgery when he was 3 days old to place a shunt in his head to drain excess fluid from around his brain.

    Daniel's physical therapist examined him in the intensive care unit, and provided his parents with information about how to position him once he was at home. She taught them gentle exercises to stretch his legs and maintain movement. 

    Once Daniel was at home, an early-intervention physical therapist evaluated his overall development, including his arm and leg movements, strength, and coordination. Daniel's medical team included other early intervention specialists who monitored his vision, brain function, fine motor skills, and speech/language skills. His physical therapist showed Daniel's parents how to help him learn to sit by himself, and roll from his stomach to his back.

    His physical therapist used toys with sounds and bright colors to encourage Daniel to move forward when on his stomach, building his muscle strength and mobility. She included singing and simple games during his treatment sessions, to help him develop his cognitive and language skills.

    Daniel's health care team will work with him and his parents as he grows to ensure that he functions at his highest levels. As Daniel continues to grow and develop, his physical therapist will work with him and his family to develop his movement skills, build his strength, find solutions for challenges, and help make sure that he enjoys a positive life experience.

     

    What Kind of Physical Therapist Do I Need?

    All physical therapists are prepared through education and experience to treat a variety of conditions or injuries. You may want to consider:

    • A physical therapist who is experienced in pediatrics and developmental disorders. Some physical therapists have a pediatric practice and will work with you and your child in the clinic, home, school, or community environment.
    • A physical therapist who is a board-certified clinical specialist or who has completed a residency or fellowship in pediatric physical therapy. This therapist has advanced knowledge, experience, and skills that may apply to developmental conditions, such as spina bifida.
    • Experienced pediatric physical therapists who also understand the importance of working with the other health professionals, who are needed to maximize outcomes for people with spina bifida.

    You can find physical therapists who have these and other credentials by using Find a PT, the online tool built by the American Physical Therapy Association to help you search for physical therapists with specific clinical expertise in your geographic area.

    General tips when you're looking for a physical therapist (or any other health care provider):

    • Get recommendations from family and friends or from other health care providers.
    • When you contact a physical therapy clinic or home health agency for an appointment, ask about the physical therapists' experience in helping children with spina bifida or other developmental disorders.
    • During your first visit with the physical therapist, be prepared to describe your child's symptoms and motor skills in as much detail as possible.
     

    Further Reading

    The American Physical Therapy Association (APTA) believes that consumers should have access to information that could help them make health care decisions and also prepare them for their visit with their health care provider.

    The following articles provide some of the best scientific evidence related to physical therapy treatment of below-knee amputation. The articles report recent research and give an overview of the standards of practice both in the United States and internationally. The article titles are linked either to a PubMed* abstract of the article or to free full text, so that you can read it or print out a copy to bring with you to your health care provider.

    Spina Bifida Association website.
    Accessed March 16, 2015.

    National Institute of Neurological Disorders and Stroke. Spina bifida fact sheet. Published June 2013. Accessed March 16, 2015.

    March of Dimes. Spina bifida overview and facts. Accessed March 16, 2015.

    Ivanyi B, Schoenmakers M, van Veen N, Matthuis K, Nollet F, Nederhand M. The effects of orthoses, footwear, and walking aids on the walking ability of children and adolescents with spina bifida: a systematic review using International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a reference framework. Prosthet Orthot Int. 2014 August 8 [Epub ahead of print]. Article Summary in PubMed.

    De-Regil LM, Fernandez-Gaxiola AC, Dowswell T, Pena-Rosas JP. Effects and safety of preiconceptional folate supplementation for preventing birth defects. Cochrane Database Syst Rev. 2010;(10):CD007950. Free Article.

    Mosley BS, Cleves MA, Siega-Riz AM, et al. Neural tube defects and maternal folate intake among pregnancies conceived after folic acid fortification in the United States. Am J Epidemiol. 2009;169(1):9–17. Free Article.

    Lynch A, Ryu JC, Agrawal S, Galloway JC. Power mobility training for a 7-month-old infant with spina bifida. Pediatr Phys Ther. 2009;21(4):362-368. Article Summary in PubMed.

    Ross M, Brewer K, Wright FV, Agur A. Closed neural tube defects: neurologic, orthopedic, and gait outcomes. Pediatr Phys Ther. 2007;19(4):288-295. Article Summary in PubMed.

    *PubMed is a free online resource developed by the National Center for Biotechnology Information (NCBI). PubMed contains millions of citations to biomedical literature, including citations in the National Library of Medicine’s MEDLINE database.

    Authored by Dawn James, PT, DPT, PCS.  Reviewed by the MoveForwardPT.com editorial board.

     

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