Understanding Spina Bifida
What Is Spina Bifida?
Spina bifida is a type of neural tube defect (NTD). The term spina bifida literally means “split spine.”
Very early in pregnancy, a structure called the neural tube forms and eventually develops into the baby’s brain and spinal cord. Normally, this tube closes completely.
With spina bifida, part of the neural tube does not develop or close as expected, leaving an opening somewhere along the spine.
This happens incredibly early—usually within the first 28 days of pregnancy, often before someone even knows they are pregnant.
According to the Spina Bifida Association, approximately 166,000 people in the United States are living with spina bifida.
Spina bifida can range from very mild to much more medically complex. How someone is affected can depend on several factors, including:
The type of spina bifida
Where the defect is located along the spine
Which nerves are affected
The size and characteristics of the defect
Whether other conditions, such as hydrocephalus or Chiari II malformation, are present
Even children with seemingly similar defects can have very different abilities and medical needs. This is why spina bifida is sometimes referred to as a "snowflake condition"—because no two cases are exactly alike.
Types of Spina Bifida
Spina Bifida Occulta
Spina bifida occulta is generally considered the mildest form.
In this type, there is a small gap in one or more of the bones of the spine, but the spinal cord and surrounding tissues do not protrude through the opening.
Some people never know they have it because it may cause no symptoms and can be discovered incidentally on imaging performed for another reason.
Meningocele
With a meningocele, the protective membranes surrounding the spinal cord—called the meninges—push through an opening in the vertebrae and form a fluid-filled sac.
The spinal cord itself generally remains within the spinal canal, so nerve damage may be less significant than with myelomeningocele.
Myelomeningocele
Myelomeningocele (MMC) is the most severe form of open spina bifida and is the type Beckham was born with.
With myelomeningocele, part of the spinal cord and nerves develop within or are exposed through an opening in the baby’s back.
Because the spinal cord and nerves are involved, myelomeningocele can affect sensation, movement, bladder and bowel function, and other parts of the nervous system.
The degree to which someone is affected varies significantly from person to person.
What Causes Spina Bifida?
Researchers believe spina bifida develops through a combination of genetic, nutritional, and environmental factors, and in most individual pregnancies, it isn’t possible to identify one specific cause.
Folate plays an important role in early neural tube development. Taking the recommended amount of folic acid before conception and during early pregnancy can reduce the risk of neural tube defects.
However, this is an important distinction: folic acid reduces risk; it does not eliminate it.
A baby can develop spina bifida even when a mother takes prenatal vitamins and folic acid exactly as recommended.
Certain medications, maternal health conditions, family history, and other factors may also increase the risk of neural tube defects, but many babies with spina bifida are born to families with no known risk factors at all.
How Is Spina Bifida Detected?
Spina bifida may be detected during pregnancy or after birth, depending on its type and severity.
Maternal Serum AFP
Alpha-fetoprotein, or AFP, is a protein produced by the developing baby.
Higher-than-expected AFP levels in a pregnant person’s blood can sometimes indicate an open neural tube defect.
An abnormal result does not diagnose spina bifida by itself, but it may lead to additional testing.
Prenatal Ultrasound
Many cases of myelomeningocele can be identified on prenatal ultrasound.
The ultrasound may show the spinal defect itself or changes involving the baby’s brain and skull that are associated with open spina bifida.
Fetal MRI
When spina bifida is suspected or diagnosed prenatally, a fetal MRI may be performed to provide more detailed images of the baby’s brain, spine, and spinal cord.
This information can help specialists better understand the defect, look for associated findings, counsel families, and determine whether fetal surgery may be an option.
After Birth
Some forms of spina bifida—particularly more subtle or closed forms—may not be diagnosed until after birth or even later in life.
Why Does the Location of Spina Bifida Matter?
You may hear doctors describe a lesion as thoracic, lumbar, lumbosacral, or sacral. These terms describe where along the spine the defect is located.
The spinal cord carries messages between the brain and the rest of the body. Different nerves control different muscles, sensations, and organ functions.
In general, a defect located higher on the spine has the potential to affect more areas of the body below it.
For example, the level of the spinal defect can influence:
Leg and foot movement
Muscle strength
Sensation
Ability to stand or walk
Bladder function
Bowel function
However, lesion level is not a perfect predictor of function.
Doctors may also talk about a child’s functional or neurological level, meaning the lowest level where nerves and muscles appear to function normally.
Two children whose defects appear to be at similar levels on imaging may ultimately have very different strength, sensation, mobility, and independence.
Conditions Commonly Associated With Myelomeningocele
Spina bifida primarily begins with the development of the spine and spinal cord, but myelomeningocele is often associated with other neurological conditions.
Chiari II Malformation
Chiari II malformation is strongly associated with myelomeningocele.
With Chiari II, structures in the lower part of the brain are positioned lower than usual and extend downward toward or into the spinal canal.
Many people with Chiari II never develop significant symptoms. When symptoms do occur, they can potentially affect functions controlled by the brainstem, including swallowing and breathing.
Ventriculomegaly and Hydrocephalus
Ventriculomegaly means that the fluid-filled spaces within the brain, called ventricles, are enlarged.
Hydrocephalus occurs when cerebrospinal fluid builds up within the brain’s ventricles and causes increased pressure or other concerning changes.
Not every child with ventriculomegaly will require treatment.
When hydrocephalus does require treatment, one common option is placement of a ventriculoperitoneal (VP) shunt, which drains excess cerebrospinal fluid from the brain into the abdomen, where the body can absorb it.
Some patients may instead be candidates for a procedure called endoscopic third ventriculostomy with choroid plexus cauterization (ETV/CPC).
Syringomyelia or Syringohydromyelia
A syrinx is a fluid-filled cavity that develops within the spinal cord.
Some syrinxes remain stable and cause no symptoms, while others can potentially affect strength, sensation, pain, or other neurological functions depending on their location and progression.
Neurogenic Bladder
One of the most common complications associated with spina bifida is neurogenic bladder.
The bladder and urinary sphincter depend on nerves to communicate with the brain and spinal cord. When those nerves are affected by spina bifida, the bladder may not store or empty urine normally.
Some children may retain urine, have abnormal bladder pressures, leak urine, or experience a combination of these problems.
Management varies depending on the child’s bladder function and may include:
Clean intermittent catheterization (CIC)
Medications to help control bladder pressures or contractions
Renal and bladder ultrasounds
Urodynamic testing
Monitoring kidney function
Additional procedures or surgeries when necessary
One of the major goals of urologic care is to protect the kidneys while also working toward healthy bladder function and continence when possible.
Neurogenic Bowel
The nerves controlling the bowel can also be affected.
Neurogenic bowel can cause constipation, difficulty completely emptying the bowel, or stool leakage.
Bowel management looks different for every person and may include dietary changes, medications, suppositories, enemas, irrigation systems, or surgical options.
Finding an effective bowel routine can become an important part of long-term spina bifida care.
Mobility, Strength, and Sensation
Spina bifida can affect the nerves responsible for movement and sensation below the level of the spinal defect.
Some people with spina bifida walk independently. Others use braces, crutches, walkers, wheelchairs, or a combination of mobility aids depending on the situation.
Some individuals may also have decreased or absent sensation in certain areas.
Reduced sensation makes skin care especially important because cuts, pressure injuries, burns, or other injuries may occur without the person realizing it.
Again, there is no single mobility outcome associated with spina bifida.
Even the location of a baby’s lesion cannot tell parents with certainty exactly what their child’s mobility will eventually look like.
Orthopedic Differences
Because spina bifida can affect muscles and nerves, orthopedic differences are also common.
These can include:
Clubfoot or other foot positioning differences
Hip abnormalities
Muscle contractures
Differences in leg strength
Scoliosis or other spinal curvature
Joint and bone concerns
Children may work with physical therapists, rehabilitation specialists, and orthopedic surgeons throughout childhood.
Treatment can include stretching, physical therapy, braces or orthotics, casting, mobility equipment, and sometimes surgery.
Tethered Spinal Cord
Another term families may hear frequently is tethered cord.
Normally, the spinal cord is able to move somewhat within the spinal canal as a child grows.
After a myelomeningocele is repaired, scar tissue can cause the spinal cord to become attached—or tethered—to surrounding tissue.
Importantly, imaging may show tethering after myelomeningocele repair without the child having symptoms. Doctors become more concerned about tethered cord syndrome when tethering begins causing new or worsening problems.
Possible signs can include:
New weakness
Changes in walking or mobility
Loss of previously acquired motor abilities
New pain
Changes in bladder or bowel function
Worsening orthopedic problems
When tethered cord becomes symptomatic, neurosurgical treatment may be considered.
Other Possible Considerations
Because spina bifida can affect multiple body systems, there are several other areas healthcare teams may monitor over time.
These can include:
Skin integrity: Reduced sensation can increase the risk of unnoticed injuries and pressure sores.
Latex sensitivity: People with spina bifida have historically been considered at increased risk of developing latex allergy, so many medical teams recommend minimizing latex exposure.
Learning and executive functioning: Intelligence varies among people with spina bifida just as it does in the general population. However, some individuals—particularly those with hydrocephalus—may experience challenges with attention, organization, processing speed, problem-solving, or other executive-function skills.
Sleep and breathing: Chiari II malformation and other neurological differences can contribute to sleep-related breathing disorders in some people.
Having spina bifida does not mean someone will experience every associated condition or complication.
How Is Spina Bifida Treated?
There is currently no treatment that can completely reverse spina bifida or restore nerves that did not develop normally.
Instead, treatment focuses on protecting neurological function, preventing complications, supporting development and mobility, and helping each person achieve as much independence as possible.
Fetal Surgery
For certain pregnancies affected by myelomeningocele, the spinal defect can be repaired before birth.
Fetal surgery does not cure spina bifida, but research has shown benefits for appropriately selected patients, including improvements in some neurological outcomes and a reduced need for treatment of hydrocephalus.
Fetal surgery also carries significant maternal and pregnancy-related risks and is only offered to patients who meet specific criteria.
Timing is especially important because fetal myelomeningocele repair is performed during a limited window of pregnancy.
Postnatal Surgery
When myelomeningocele is not repaired prenatally, the defect is typically surgically closed shortly after birth.
The goal is to protect the exposed spinal cord and nerves, close the surrounding tissues and skin, and reduce the risk of infection and further injury.
Closing the defect cannot reverse nerve damage that has already occurred.
Lifelong Multidisciplinary Care
For many people, spina bifida care continues throughout life.
A child may be followed by specialists in:
Neurosurgery
Urology
Physical medicine and rehabilitation
Orthopedics
Physical and occupational therapy
Developmental pediatrics
Bowel management
Primary care
Other specialties depending on their individual needs
Many children’s hospitals offer multidisciplinary Spina Bifida Clinics, allowing families to see several specialists who work together to coordinate care.
A Diagnosis Cannot Predict an Entire Life
When you’re first given a diagnosis like spina bifida, it can feel like you’re handed an enormous list of everything that could happen.
Hydrocephalus. Neurogenic bladder. Bowel problems. Mobility challenges. Surgeries. Wheelchairs. Tethered cord.
It is a lot to absorb.
But something I wish every newly diagnosed parent could hear alongside that list is this:
Those possibilities are not a prediction of your child’s life.
Medical information is important. Understanding potential complications is important. Being prepared and advocating for your child is important.
But your baby is still a baby first.
They are not a lesion level.
They are not an MRI.
They are not a list of potential complications.
And there is so much about their future that a diagnosis simply cannot tell you.
That is something I continue reminding myself as we learn what spina bifida will look like for Beckham.
Disclaimer: This information is shared for general education and parent-to-parent support based on our family’s experience and should not replace individualized medical advice from your child’s healthcare team.
Additional Resources
For more detailed information about spina bifida, I highly recommend the Spina Bifida Association, including its resources for newly diagnosed families and its Guidelines for the Care of People with Spina Bifida.
The Centers for Disease Control and Prevention (CDC) also provides information about neural tube defects, folic acid, prevention, diagnosis, and living with spina bifida.
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