Spina Bifida Awareness

October is Spina Bifida Awareness Month!

31 Things to Know About Spina Bifida

  1. Spina bifida is the most common permanently disabling birth defect in the United States.
  2. In the U.S., approximately 1,500 children are born with spina bifida each year.
  3. Spina bifida is a type of neural tube defect. It occurs when the neural tube (which later becomes the brain and spine) does not close correctly. This happens in the first several weeks of pregnancy – before most women know they are pregnant. 
  4. Spina bifida literally means “split spine” in Latin.
  5. Spina Bifida Occulta is the mildest of the 3 most common types of spina bifida. It is often called “hidden” spina bifida because many do not know they have it. There is a small gap in the spine, but no opening. There are often no symptoms and people find out about it if they have an x-ray for something unrelated. Mild neurological symptoms may appear as the person ages.
  6. Another form of spina bifida is Meningocele, where a fluid-filled sac protrudes from an opening in the baby’s back, but the spinal cord is not in the sac, and there is usually no nerve damage. Individuals with this type of spina bifida may have minor disabilities.
  7. The most severe type of spina bifida is Myelomeningocele. With this condition, a sac of fluid comes through an opening in the baby’s back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida can cause moderate to severe disabilities, including paralysis, mobility issues and loss of bowel and bladder control.
  8. Outcomes for individuals with myelomeningocele depend on size and location of the opening on the spine, and range from mild to severe. Generally, the higher the opening, the more severe the complications are but it is different for every individual.
  9. For people with mobility issues, adaptive sports can be a fun way to stay in shape!
  10. Spina bifida is often detected during pregnancy by:
  • Alpha-fetoprotein (AFP) blood screening
  • Ultrasound of the fetus
  • Amniocentesis
  1. When a baby is born with myelomeningocele spina bifida, in which the spinal cord is exposed, doctors will generally perform surgery 24 – 48 hours after birth.
  2. Some babies with spina bifida can have surgery to close the opening in the spine while still in the womb. This may help minimize damage to the spine and increase the likelihood that a child will be able to walk.
  3. The average total lifetime cost of care for each infant born with Spina Bifida is $800,000. Hospitalization costs are more than $600 million annually in the US.
  4. SBRN hosts an annual peer-led, fun and interactive 3-day Empowerment Retreat for adults with disabilities. The retreat is developed, coordinated and facilitated by disabled adults & provides participants a safe space to discuss the impact that disability-related & everyday issues have on their lives, as individuals and as a community.
  5. 70%-90% of children with myelomeningocele spina bifida also experience hydrocephalus, or extra cerebral-spinal fluid in and around the brain that causes swelling. A shunt, which is a small hollow tube that helps drain the fluid, will often be surgically inserted.
  6. Additional surgery might be needed to change the shunt as the child grows or if it becomes clogged or infected. 40% of shunts for hydrocephalus fail or become infected and need to be changed within 1 year; 60% within 5 years; 80-85% within 10 years.
  7. The exact reasons why Spina Bifida occurs are unknown.  Environmental and genetic factors are thought to play a role.  Research shows that appropriate levels of folic acid (a B vitamin) can help to reduce the chances of SB from occurring. 
  8. Research shows that women, who along with a healthy diet and lifestyle, take 400 mcg of folic acid daily before pregnancy and during the first trimester, reduce the risk of having a baby born with Spina Bifida by up to 70%. Even with the best prenatal care, spina bifida can still occur.           
  9. Personal or family history of spina bifida increases your chances of having a pregnancy affected by SB. Your doctor may prescribe a higher daily dose of folic acid (4mg).
  10. The U.S. Food and Drug Administration mandated adding folic acid to all enriched cereal grain products in 1998. Subsequently, the prevalence rate of spina bifida declined 31% from pre-fortification rates.
  11. Internationally, the highest rates of spina bifida occur in Ireland and Wales. In the U.S., Hispanic women have the highest rates of having a child with SB.
  12. Children and adults with spina bifida often need treatment and ongoing care from multiple providers including: neurologists, urologists, orthopedists, physiatrists, physical therapists, occupational therapists, dietitians and others.
  13. Retailers have become savvier about offering clothing and shoes, as well as costumes for people of all different abilities.
  14. Animals can be born with spina bifida too. For dogs, the English bulldog is the most common breed with spina bifida. As with people, symptoms can range from mild to severe.
  15. Many children with spina bifida need training to learn to manage bowel and bladder functions at home and in school. Some people with SB require catheterization, or the insertion of a tube to permit passage of urine.
  16. The courts have generally held that schools must provide students with Spina Bifida services for catheterization to provide meaningful access to education. A nurse can help until the child learns to catheterize on their own.
  17. Many children with spina bifida do well in school. Some may experience difficulties with learning and may qualify for an Individualized Education Program (IEP) – a legal document that says what types of specially designed instruction is needed for the child to succeed at school.
  18. If a child with spina bifida does not qualify for an IEP, parents can request a 504 Plan be developed for their child that will address services, accommodations and modifications to the learning environment.
  19. Spina bifida can cause nerve damage that can affect sexual functioning. Most people with spina bifida are fertile, want to be in a loving relationship and can have children.
  20. Research has found that the majority of people with spina bifida are sensitive to natural rubber latex, the substance often used to make surgical gloves, balloons and condoms.
  21. More than 90% of babies born with spina bifida reach adulthood. With effective treatment, equipment and supports, people with SB live full and productive lives.
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