Spina Bifida Awareness Month: Deep Dive

Welcome to Spina Bifida Awareness Month! This month, we aim to take a deep dive on this condition by discussing its history, what Spina Bifida is, how to prevent it, how to treat it, and what the next steps are in the ongoing battle to better address Spina Bifida.

The Historical Perspective

Did you know that spinal defects have existed since the beginnings of mankind? Anthropologists have uncovered depictions of people with malformed spinal cords in statues and artifacts from ancient civilizations. The first documented description of a Spina Bifida case came in 1653, thanks to Nicolas Tulp, a Greek physician. Tulp proposed the term and described it as a vertebral anomaly. Spina Bifida continued to puzzle surgeons from the early 1600s to the mid-1800s. They tried various techniques but nothing seemed to benefit these patients. It wasn’t until the middle of the nineteenth century that Dr. James Morton’s technique, using an iodine and glycerine solution, proved successful.

In 1973, the Spina Bifida Association of America was formed in Chicago, primarily as an information source for its chapters and members. Over time, it played a crucial role in improving treatments and diagnostics, ultimately leading to the declaration of October as the official Spina Bifida Awareness Month. In the twenty-first century, events and fundraisers have increased awareness in the ongoing battle to better treat Spina Bifida.

What is Spina Bifida?

Some of you may be saying to yourselves, “I am glad to know it is Spina Bifida Awareness Month, but What is Spina Bifida exactly?” Spina Bifida occurs early in pregnancy, before many even realize they are pregnant, during the third and fourth weeks of pregnancy when a portion of the fetal spinal cord fails to properly close. As a result, the child is born with a part of the spinal cord exposed on the back.

Spina Bifida is the most common permanently disabling birth defect. In the United States, approximately 18 cases of myelomeningocele, a specific form of Spina Bifida, per 100,000 live births were estimated in 2005. However, the Spina Bifida Association conservatively estimates that there are 70,000 people living in the United States with the condition. The prevalence appears to have decreased in recent years due in part to preventative measures followed by expectant mothers.

While genetic and environmental factors may interact to cause Spina Bifida, it’s important to highlight that 95% of babies with Spina Bifida are born to parents with no family history. Women with certain chronic health problems, including diabetes and seizure disorders treated with specific anticonvulsant medications, have an increased risk of having a baby with Spina Bifida.

Types of Spina Bifida

The symptoms of Spina Bifida vary depending on the location and extent of the spinal cord and overlying structures that have not developed correctly. There are three common subtypes:

  1. Occulta: Also called “hidden Spina Bifida,” it involves a small defect or gap in the spine’s small bones, with no opening on the back. Many people with this form of Spina Bifida may not even be aware of it unless discovered on an unrelated x-ray.
  2. Meningocele: This type occurs when the bones do not close around the spinal cord, and the meninges, which help protect the spinal cord, are pushed out through the opening, forming a fluid-filled sac. The spinal cord and nerves are usually normal or less severely affected.
  3. Myelomeningocele: This is the most severe form, accounting for about 75% of all Spina Bifida cases. In this case, a portion of the spinal cord itself protrudes through the back. The extent of neurological disabilities depends on the location and severity of the spinal cord defect.

The defect is most often detected during maternal screening tests and/or fetal ultrasound. However, those with extremely small lesions may not be diagnosed until after delivery.

Treatment Options for Spina Bifida

If this type of defect is detected, parents should seek out a pediatric neurosurgeon to understand the condition, prognosis, and options for treating their child while in the womb. There has been significant progress in this area, with numerous successful surgeries performed while the baby was still in the womb to address Spina Bifida.

Now, let’s talk about the treatment options available for Spina Bifida.

The best way to treat it is with prevention. Women of childbearing age can reduce their risk of having a child with Spina Bifida by taking 400 micrograms (mcg) of folate every day before conception. Research has shown that if all women of childbearing age took a multivitamin with folate, the risk of neural tube defects could be reduced by up to 70%. This is also why most of our foods are fortified with folic acid, which is well-meaning but has led to some unwelcomed side effects.

If, however, you find out during a pregnancy check-up that your child has Spina Bifida, then fetal surgery, as we mentioned earlier, is an option. This has shown promising but mixed results. Fetal surgery is considered only at specialty centers with teams experienced in fetal surgery due to the higher risk of complications.

Infant Surgery: After birth, a baby born with Spina Bifida needs to have the exposed part of the spinal cord repaired to prevent further injury and infection. Surgery is now most often completed within the first 48 hours of the baby’s life.

After treatment, each patient should undergo baseline imaging and detailed neurologic and muscular exams to stay on top of any possible issues that can arise.

Fortunately, with proper medical care, many children with Spina Bifida can lead active and productive lives. Twenty-year follow-up studies show that they enter college in the same proportion as the general population, and many are actively employed. With ongoing advancements in medical care, the outlook for individuals with Spina Bifida continues to improve.

I hope you found this episode informative and that it helped you understand Spina Bifida just a little better. If you’d like to learn more about other health-related topics, you can go to Centurion Labs.

Thank you for reading, and remember, go out today and take ownership of your health because no one cares more about your health than you! Until next time, take care, and stay healthy!