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Everything You Need to Know About Spina Bifida

September 30,2020 |

Spina bifida is one of the most common birth defects in the United States. It affects about 1,600 to 2,000 babies each year and an estimated 166,000 children and adults are currently living with spina bifida in the U.S. With October being National Spina Bifida Month, we thought it was important for people to understand what spina bifida is, what causes it, how it’s diagnosed, and what the treatment plans are like. In an effort to increase awareness about this disease, here’s everything you need to know about spina bifida.

What is Spina Bifida?

Spina bifida is a birth defect that occurs when a baby’s spine and spinal cord don’t form properly during the third and fourth weeks of pregnancy. It’s considered a neural tube defect (NTD) and can occur anywhere along the spine. The improper formation of the spine and spinal cord leads to gaps in the backbone not properly fusing or closing—creating more susceptibility for problems or damage to nerves in the spinal cord.

Cases of spina bifida range from mild to severe and fall under one of the three most common types of spina bifida—myelomeningocele, meningocele, and spina bifida occulta


Myelomeningocele is the most common type of spina bifida and is also the most serious. When people usually think about spina bifida, they think about myelomeningocele—it causes the majority of serious disabilities throughout life. Myelomeningocele occurs when a sac comes through an opening in the baby’s back which contains part of the spinal cord, the meninges (covering of the spinal cord), and spinal fluid. This type of spina bifida can be seen on a baby’s back and can lead to problems with the urinary system, a loss of feeling in the leg’s or feet, and problems with movement.


With meningocele, the sac that protrudes from a baby’s back does not include the spinal cord, only the fluid. This results in less nerve damage and therefore does not usually cause disabilities as severe as myelomeningocele. Meningocele is the least common type of spina bifida.

Spina Bifida Occulta

Spina bifida occulta occurs when the baby’s backbone doesn’t form fully during pregnancy, resulting in a small gap between the bones of the spine. This is actually fairly common and occurs in about 1 out of 10 people yet doesn’t cause many health problems or disabilities.

Causes of Spina Bifida

Unfortunately, doctors still do not have a definitive cause for spina bifida. Scientists believe that genetic and environmental factors may act together, but 95% of babies with spina bifida are born to parents with no family history. While it’s the most common, permanently disabling birth defect in the U.S., the prevalence has been decreasing since more preventative measures and prenatal testing have been discovered. Some women are more at risk for having a baby with spina bifida, but there are actions you can take to help mitigate these risk factors.

Risk Factors

Spina bifida tends to disproportionately affect women, Caucasians, and Hispanics. You’re more at risk for having a baby with spina bifida if you have one or more of the identified risk factors:

  • Folate deficiency
  • Family history of neural tube defects
  • Use of anti-seizure medications like valproic acid (Depakene)
  • Diabetes
  • Obesity
  • Increased body temperature (hyperthermia)

    If you have any of these risk factors for spina bifida and are trying to get pregnant, talk to your doctor about what you can do to mitigate your risks. Some doctors will recommend and increase in folic acid, above 400 mcg, to help encourage healthy neural tube development, but do not make any changes to your supplements prior to discussing it with your doctor.

    Is Spina Bifida Preventable?

    While there’s no cut and dried formula that will guarantee the prevention of spina bifida, there are things that have been shown to have a measurable impact on the likelihood that your baby develops it.

  • Take 400 mcg of folic acid every day, starting one month before conception
  • Disclose any prescriptions or over-the-counter drugs, vitamins, or herbal supplements that you’re currently taking
  • Make sure that any medical conditions are properly managed before trying to become pregnant
  • Avoid overheating your body
  • Treat fevers immediately with pregnancy-approved medicine

Symptoms of Spina Bifida

Every person diagnosed with spina bifida will have different symptoms depending on the type and severity of their condition, most of which are physical. In cases of myelomeningocele and meningocele, you can see the exposed sac poking through an infant’s back. In cases of spina bifida occulta, the most obvious sign is often a tuft of hair or a birthmark at the site of the defect.

Other symptoms of spina bifida include:

  • Weakened or compromised leg muscles
  • Inability to move the legs as an infant
  • Unusually shaped feet
  • Uneven hips
  • Curved spine (scoliosis)
  • Seizures
  • Urinary problems
  • Trouble breathing or swallowing
  • Difficulty moving upper arms

If you notice any of these symptoms during your baby’s development, it’s important to see a doctor for the proper diagnosis.

How is Spina Bifida Diagnosed?

Spina bifida can be diagnosed both during pregnancy and after delivery. The most common prenatal test performed during pregnancy is the alpha-fetoprotein (AFP) test. The AFP test is a blood test done between the 16th and 18th week of pregnancy to measure how much AFP has passed in the mother’s bloodstream. If the numbers are high, it could indicate spina bifida. More tests will be performed to double check in the case of high AFP levels.

Doctors can sometimes see the defect during a prenatal ultrasound and amniocentesis can be performed to confirm. In most cases, spina bifida is found after birth due to the presence of one or more of the symptoms above.

Complications of Spina Bifida

Depending on the type and severity of spina bifida, it can present itself by showing either minimal symptoms or severe physical disabilities. This severity is often affected by the size of the problem, location, and relation to the spinal cord of the NTD. Severity is also intensified when the affected area is exposed, or certain spinal cord nerves are protruding. The primary complications of spina bifida include the following:

  • Walking and Mobility Problems
  • Orthopedic Complications
  • Bowel and Bladder Problems
  • Hydrocephalus
  • Shunt Malfunction
  • Chiari Malformation Type II
  • Meningitis
  • Tethered Spinal Cord
  • Sleep-Disordered Breathing
  • Skin Problems
  • Latex Allergies
  • Higher Rates of UTIs
  • Gastrointestinal Disorders
  • Depressions
  • Learning Disabilities

Treatment for Spina Bifida

No treatment plan for spina bifida is the same. Since each person diagnosed will have different types that range in severity, treatment plans need to be unique to the patient. If spina bifida is caught during the pregnancy, there are a few things that can be done to help reduce the severity of the birth defect prior to delivery. Otherwise, infant surgery and lifestyle modifications will be needed. The best way to treat spina bifida before it develops is through the supplementation of folic acid, which can reduce NTD by up to 70%.

Fetal Surgery

If spina bifida isn’t treated quickly, the nerve function can continue to get worse over time. Fetal surgery can help mitigate that by treating the problem early, so it doesn’t get worse during development. Surgeons recommend fetal surgery for spina bifida before the 26th week of pregnancy to help reduce the likelihood that disabilities will be severe and result in assisted walking devices. Fetal surgery comes with its own benefits and risks, so make sure you discuss it fully with your doctor. Your doctor will also likely recommend a cesarean birth to avoid any complications during delivery.

Infant Surgery

If you opt out of fetal surgery, infant surgery in cases of myelomeningocele can help minimize the risk of infections associated with exposed nerves and protects the spinal cord from increased trauma. Infant surgery places the exposed spinal cord and tissue back inside the body and is then covered with muscle and skin. Shunts may also be used to control the risk of hydrocephalus.

Living with Spina Bifida

Spina bifida requires ongoing care to monitor and track development and ensure that no complications arise. Doctors will need to see children with spina bifida regularly to evaluate their growth rate and determine whether or not further medical care is needed. Many children with spina bifida grow up requiring ongoing care in physical rehabilitation, physical therapy, neurology, pediatric urology, orthopedics, occupational therapy, special education teachers, and dietitians. However, children with spina bifida can still lead relatively normal lives. They can go to college, get a career, and even have families of their own. To help encourage your child to grow up with strength and confidence, it’s important to understand the best ways to cope and support your child during their development.

Every year, over 1,600 babies are born with spina bifida in the United States. Since 1985, Congress has designated October as National Spina Bifida Month. For the past 40 years, Byram Healthcare has been a leading provider of urological supplies, which can help make living with spina bifida more manageable. Contact Byram Healthcare and see why customers have relied on our superior service to make things easy and hassle-free.