About Spina Bifida

For current data and statistics regarding the incidence of Spina Bifida, please visit the CDC website: https://www.cdc.gov/ncbddd/spinabifida/index.html

What is Spina Bifida?

Spina Bifida is the most common permanently disabling birth defect compatible with life in the United. States. Spina Bifida literally means “split spine”. It is a neural tube defect which occurs during the first 28 days of pregnancy when the spinal column does not close all of the way. Commonly referred to as the “snowflake condition”, Spina Bifida affects all individuals differently, depending upon the size and location of the opening on the spine.

The three most common types of Spina Bifida are:

Spina Bifida Occulta

Spina Bifida Occulta is often called “hidden Spina Bifida” because about 15% of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm and has no visible signs or impact to spinal cord or nerves. People often find out they have it as an incidental finding after having an X-ray of their back done for other reasons. Occasionally, individuals will experience pain and neurological symptoms. For example, 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.

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, and a majority of children with this condition also have Hydrocephalus. This occurs when the fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Not all children with Hydrocephalus have Spina Bifida, so parents need to check with a doctor.

Other variations of Spina Bifida include:

  • Occult Spinal Dysraphism (OSD)
  • Lipomyelomeeningocele
  • Fatty Filum Terminale
  • Split Cord Malformation
  • Terminal Myelocystocele

How is Spina Bifida treated?

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/Meningomyelocele usually is 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 followed by a doctor to check for other serious issues.
  • 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.

Spina Bifida can impact the body in a variety of ways. Some individuals may be fully ambulatory, while other people with Spina Bifida may encounter degrees of paralysis and could make use of a mobility device like a wheelchair, crutches, walker, or similar. Others may deal with urological issues and use catheters, while still others may have neurological impairments and may benefit from an Individualized Education Plan (IEP). Each individual’s experiences and needs are unique to them and building a team of medical professionals who can address your specific needs is an important part of living a healthy life. This can be done with the help of a Spina Bifida Clinic. Several Spina Bifida Clinics exist in New England. If you are not already connected with your nearest clinic, SBAGNE can assist you in making that connection. It is important to remember that, despite the uncertainty that can come during diagnosis, individuals with spina bifida empowered and impactful lives and SBAGNE exists to help you make the connections necessary to do so.

Prevention

While there is no known cause, it has been shown that women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children.

Additionally, women who have a child or sibling with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy. Research shows the likelihood of having a second baby with Spina Bifida is about three percent. It’s important to know that neural tube defects like Spina Bifida are not entirely understood, and Spina Bifida is not something that is caused by the actions of the parents. It is recommended that adults with Spina Bifida and couples who already have a child with Spina Bifida talk with their OB-GYN or genetic counselor about their risk factors and ways to reduce the risk.

Resources

Center for Disease Control: https://www.cdc.gov/ncbddd/spinabifida/index.html
Spina Bifida Association: https://www.spinabifidaassociation.org/
Guidelines:  https://www.spinabifidaassociation.org/guidelines
App: https://www.spinabifidaassociation.org/mobile-application

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