Happy Spina Bifida Month! #BeyondAllLimits

Fun Facts1

  • Spina Bifida is sometimes called the “snowflake” of birth defects because no two people with Spina Bifida are exactly alike. 
  • Every day 8 babies are born with Spina Bifida.
  • Spina Bifida occulta or “hidden Spina Bifida” occurs in 15% of the population.
  • Spina Bifida can occur anywhere along the spine. 
  • Spina Bifida occurs in the first 28 days of pregnancy, often before a woman knows she’s pregnant. 
  • Spina Bifida is the most common neural tube defect, and impacts the brain and spinal cord. 
  • Spina Bifida means, “split spine”. It occurs when a baby’s spine doesn’t close completely. 
  • In the United States, 177,000 people live with Spina Bifida. 

 

What is Spina Bifida?2

Spina Bifida is a birth defect that occurs when the spine (backbone) does not close properly, leaving the spinal cord nerves unprotected.  This birth defect occurs during the first month of pregnancy when the spinal cord and spine are developing. 

Spina Bifida can occur anywhere along the spine and affects both the spinal cord and brain. In some cases, there may be an opening in the back in which the spinal cord can push through and be seen outside the body. Other times, the defect remains under the skin, unseen. The severity of this birth defect depends on location, the extent of the opening, and development. 

 

Types of Spina Bifida2

  1. Spina Bifida Occulta: mildest form and usually goes unnoticed. The opening in the spine is small and the spinal cord stays in place and is usually not damaged. 
  2. Spina Bifida Aperta: two types 
    • Meningocele: most rarest form. The meninges (membranes that cover/protect the brain and spinal cord) push through the opening in the spine creating a fluid filled sac on the baby’s back. 
    • Myelomeningocele: most common and severe form. The meninges and spinal cord push through the opening in the spine to form a sac. This causes damage to the nerves and can cause paralysis and infections.

 

What causes Spina Bifida?2

There is not one specific cause for Spina Bifida and researches are unsure what the exact cause is. One possible cause for Spina Bifida is having low levels of folic acid during early pregnancy. Folic acid is a vitamin that aids in cell growth, tissue formation, and development. Lack of folic acid before and during pregnancy can increase the risk of developing spina bifida or other neural tube defects. 

 

What other medical conditions are associated with Spina Bifida?3

  • Hydrocephalus: extra fluid build up in the brain. 
  • Hip joint maldevelopment: abnormal development of the hip. 
  • Chiari II malformation: lower part of the brain sits in the upper part of the neck. 
  • Learning disabilities: language, reading, paying attention. 
  • Meningitis: infection causing swelling in the brain and spinal cord. 
  • Tethered spinal cord: spinal cord held tightly in place, causing the spinal cord. to stretch with growing. 
  • Urinary tract infections: unable to control bowel and bladder function. 

 

How is Spina Bifida treated?3

Babies or children who are diagnosed with Spina Bifida need a medical team to support their care. The team members will vary depending on the severity and different health problems your child has. The medical team may consist of:

  • Developmental Therapist - behavior and social skills.
  • Neurologist - problems with brain, spinal cord, and nerves. 
  • Occupational Therapist - activities of daily living. 
  • Orthopedist - injury or abnormal development with bones and joints. 
  • Pediatrician - baby and child doctor. 
  • Physical Therapist - strength and movement. 
  • Psychiatrist - mental illness. 
  • Psychologist - social and mental health problems. 
  • Urologist – problems with the urinary tract (kidneys, bladder, ureters, and urethra) 

 

What role does physical therapy have in treating Spina Bifida?4

A physical therapist plays an important role in the medical team for treating children with Spina Bifida. Physical therapy adds in gaining and maintaining mobility and function through the life spine of individuals diagnosed with Spina Bifida.  

More specifically, the role of a physical therapist is to maximize function and control as it relates to muscles, nerves, and movement patterns. They also work to minimize orthopedic impairments such as joint contractures, bony deformities, or other ailments caused from Spina Bifida.  Physical therapists will also aid in pain control and promoting long-term function. 

Physical therapists also communicate with other medial team members when needed for orthotics, adaptive equipment, and access for home, school, and the community. They create open lines of communication with all team members in order to prioritize decision-making and involve the child through the lifespan. 

 

What are good resources to learn more about Down Syndrome?5

  • Kids Health: http://kidshealth.org/en/parents/spina-bifida.html#
  • March of Dimes: http://www.marchofdimes.org/complications/spina-bifida.aspx
  • Move Forward PT: http://www.moveforwardpt.com/SymptomsConditionsDetail.aspx?cid=ae3cdc05-62eb-4a47-a8b9-ae079d3b3f5b
  • My Child Without Limits: http://www.mychildwithoutlimits.org/understand/spina-bifida/spina-bifida-resources/
  • Spina Bifida Association: http://spinabifidaassociation.org/ 

 

 

Citations:

  1. Child Without Limits
  2. Kids Health
  3. March of Dimes
  4. Move Forward PT
  5. Spina Bifida Association 

           

          Photos: Canva, Pixabay, Child Without Limits

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