Infant baby

What Is Spina Bifida?

Spina bifida is a congenital birth defect that happens within the first few weeks of pregnancy as the tissue that will become the baby’s brain and spinal cord is developing. This tissue is called the neural tube. Spina bifida happens when the neural tube fails to develop or close properly, leaving the spinal cord and bones in the spine (vertebrae) unprotected.

A damaged spinal cord may not be able to send messages to and from the brain regarding body temperature, pain/touch sensations, bodily movements and other vital functions. 

Spina bifida affects approximately one out of every 1,000 newborns and is the most common neural tube disorder. But that doesn’t make your diagnosis any less frightening. This article answers some of parents’ most common questions about spina bifida to help you understand the different types, causes, symptoms and treatment options.

Types of Spina Bifida

The three most common types of spina bifida are myelomeningocele, meningocele and spina bifida occulta. They’re big words, but we will break them down below to help you understand the differences. 

Myelomeningocele

(my-uh-lo-muh-NING-go-seel; hear the pronunciation)

The term spina bifida is often used interchangeably with this type, as it’s the most common and severe form of spina bifida. In myelomeningocele, also called open spina bifida, the spinal cord and nerves that should be protected inside the back stick out through a gap in the spine in a fluid-filled sac. This sac isn’t covered by skin and is exposed to the amniotic fluid that surrounds the baby in the womb. Being in contact with this fluid can cause ongoing damage to the sensitive spinal cord as it develops. A baby born with myelomeningocele may experience:

  • Bladder and bowel problems (incontinence).
  • Weakness, loss of sensation or paralysis below the defect.
  • Chiari malformation: a condition where the back part of the brain doesn’t form correctly and sits too low, closer to the top of the spine. This can block the fluid that’s supposed to flow around the brain, which might cause fluid buildup and lead to brain function problems.
  • Water in the brain (hydrocephalus): when there’s too much cerebrospinal fluid in the head.
  • Abnormal development of the feet and legs, such as clubfoot.

Meningocele 

(muh-NING-go-seel; hear the pronunciation)

In this rare and milder form of spina bifida, the coverings of the spinal cord poke through the gap in the baby’s back, creating a sac. However, the sac does not contain nerves or spinal tissues. This can cause minor disabilities, but there is a lower risk of nerve damage. 

Spina Bifida Occulta

Spina bifida occulta is the mildest form of spina bifida and the hardest to detect. In fact, occulta means hidden in Latin. It’s characterized by a small gap in the spine but no opening or protrusion on the back. The spinal cord and the nerves are usually normal. In many cases, spina bifida occulta goes undetected at birth and may not even be diagnosed until adulthood. 

What Causes Spina Bifida? 

The first thing to know is that spina bifida is not the fault of either parent. Birth defects can happen during any pregnancy and usually cannot be predicted or prevented

As for what causes spina bifida, scientists believe that both genetic and environmental factors may work together, but no one knows the exact cause of the condition.

Risk Factors for Spina Bifida

While there is no clear cause, researchers have identified some risk factors that make it more likely for your baby to develop the condition, including low levels of folic acid intake during early pregnancy and certain medications, like those taken for seizures, that can interfere with the body’s absorption of folate. 

Spina bifida is more common among white people and Hispanics. Girls are also more affected than boys. The Spina Bifida Association (SBA) outlines additional risk factors, including diabetes and obesity during pregnancy and increased body temperature from fever or hot tub or sauna use during the early weeks of gestation. 

How Is Spina Bifida Diagnosed?

In most cases, your doctor will detect the signs of spina bifida, like an open spine, during an ultrasound while your baby is still in the uterus. There are other ways to test for spina bifida as well, according to SBA. 

  • A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). AFP values are higher in about 75% to 80% of women who have a fetus with spina bifida.
  • 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.

Can I Prevent Spina Bifida? 

Since the exact cause is unknown, there is no way to prevent the condition from developing. However, women who may become pregnant are encouraged to take folic acid before becoming pregnant and throughout the first three months of pregnancy. 

Folic acid is a synthetic form of the B9 vitamin that’s been shown to reduce the risk of spina bifida. Since the condition forms so early in pregnancy — often before you know you’re pregnant — it’s important to get enough folic acid even before conception. 

Given that half of pregnancies in the U.S. 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.”

Folic acid is especially important for women who have a child or sibling with spina bifida or have spina bifida themselves. If this is you, ask your doctor if you need a higher dose. 

What Happens After a Spina Bifida Diagnosis?

If your baby is diagnosed with spina bifida while still in the womb, your OB-GYN may refer you to a maternal-fetal medicine specialist or a fetal surgeon who can walk you through the treatment options. 

Open Fetal Surgery for Spina Bifida Repair

Spina bifida is a progressive condition, meaning the damage to your baby’s spinal cord may get worse as the pregnancy progresses. Depending on how far along you are in your pregnancy and the severity of the condition, your fetal surgeon may recommend fetal surgery to repair the spinal column in utero. This can prevent further damage and lessen the risk of severe disabilities once your baby is born. 

Fetal surgery to repair spina bifida usually takes place before the 26th week of pregnancy.

During the surgery, your fetal surgeon will use a tiny camera-guided scope to access your uterus and close the opening using skin from your baby’s back. Once the procedure is done, your baby will continue to grow in your uterus and will be monitored closely by your care team until your delivery day. 

Postnatal Spina Bifida Repair

If you and your fetal care team decide the best course of action is to repair your baby’s spina bifida after birth, you will receive frequent ultrasounds to monitor the growth of your baby throughout the pregnancy. 

Your baby will likely undergo surgery within 72 hours of being born to minimize the risk of infection or further nerve damage.  

The decision of whether to pursue prenatal or postnatal treatment is a very personal one between you and your fetal care team and depends on a number of factors, including gestational age and the severity of the condition.

What Is It Like Living With Spina Bifida?

A spina bifida diagnosis comes with many questions, including about the quality of life your child will have. Every spina bifida case is unique, but the prognosis for children born with spina bifida is good. Thanks to advancements in medicine, “about 90% of babies born with spina bifida now live to be adults, about 80% have normal intelligence and about 75% play sports and do other fun activities,” according to the SBA. 

After your baby is born, you’ll work with a multidisciplinary team of pediatric neurosurgery, urology, social work and other specialists as needed to provide support to help your baby thrive.

You’re Not Alone

It’s natural to feel anxious after a spina bifida diagnosis. It might not be what you expected, and the uncertainty can leave you feeling isolated. Learning more about spina bifida and your treatment options is a good first step. Talk over any questions or concerns you have with your fetal care team, and reach out for additional support as needed. The Spina Bifida Association has a wealth of resources for expectant parents all the way up to adults living with spina bifida. You may also ask your fetal care team to recommend local resources for support and education.

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