What is Spina Bifida?
Spina Bifida is the most common permanently disabling birth defect that is associated with life in the United States. It’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine.” Typically occurring within the first 28 days of pregnancy while the neural tube is forming, Spina Bifida often occurs before a woman knows she is pregnant.
Commonly referred to as the “snowflake condition” of birth defects because no two cases are the same, Spina Bifida can range from mild to severe. The severity depends on everything from the size of the opening to the location on the spine.
How is Spina Bifida Diagnosed?
- In utero, there are three tests, but, it is important to remember that no medical test is perfect and the results are not always 100 percent accurate. Spina Bifida can be detected in utero by one of the following tests:
- A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 percent of women who have a fetus with Spina Bifida.
- An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.
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What Causes Spina Bifida?
No one knows for sure. Doctors and scientists believe that a complex mix of both genetic and environmental factors act together to cause the condition.
What are the different types of Spina Bifida?
The three most common types of Spina Bifida are:
Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.
Meningocele
Meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.
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Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because the fluid that protects the brain and spinal cord is unable to drain as it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.
Other variations of Spina Bifida include:
- Occult Spinal Dysraphism (OSD)
- Lipomyelomeningocele
- Fatty Filum Terminal
- Split Cord Malformation
- Terminal Myelocystocele
Most common characteristics? conditions?
While Spina Bifida is known as a snowflake condition because no people are the same, many people with Spina Bifida also have hydrocephalus that requires the use of a shunt, and many also have Arnold Chiari malformation.
Who should I consult if I suspect?
Don’t feverishly search for “Spina Bifida” online or on social media. Although many organizations offer valuable resources, there are even more who have out-of-date or inaccurate information.
Do make sure that the information you gather is from a trusted, experienced source, and that you follow the advice of health and medical professionals who are knowledgeable about Spina Bifida. Search our list of clinics and providers, and contact our National Resource Center for more information, including how to connect with parents and caregivers who have been in your shoes.
Don’t exhaust yourself trying to determine exactly what the future holds. A diagnosis of Spina Bifida is a lot to take in. While you can’t help but wonder what having a child with Spina-Bifida will be like, it’s important to take one step at a time.
Do speak with other parents and caregivers who have experienced what you are going through. Contact our National Resource Center, visit our Spina Bifida Parents Facebook Group, or ask your local Chapter to direct you to their network of parents.
Treating or Treatments?
Treatment for Spina-Bifida depends on the severity of the condition. Below are the ways in which Spina-Bifida is treated before or shortly after birth.
- A child with Myelomeningocele is usually operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.
- A child with Meningocele usually is treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up without complications, but they should be checked by a doctor because they could have other serious problems, too.
- A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.
- Spina Bifida Occulta typically does not require treatment.
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The following links address strengths difficulties and helpful strategies:
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Resources that Promote a Healthy School Environment for Students Living with Spina-Bifida
https://www.spinabifidaassociation.org/resource/beyond-crayons-resource-packet/ [5]
A resource that addresses learning difficulties that children with Spina_Bifida may face.
https://www.spinabifidaassociation.org/resource/learning/ [6]
A resource that discusses education issues for children with Spina_Bifida and how to address
https://www.spinabifidaassociation.org/resource/education-issues/ [7]
A resource addressing reading comprehension difficulties and Spina_Bifida
https://www.spinabifidaassociation.org/resource/reading-comprehension/ [8]
A resource addressing math difficulties and Spina_Bifida
https://www.spinabifidaassociation.org/resource/math-difficulties/ [9]
Related: List and Explanation of Disabilities for Disability Awareness Month [10]
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