Spina bifida affects far more than the spine. Because the spinal cord coordinates signals between the brain and the rest of the body, an opening in the vertebrae during fetal development can disrupt movement, sensation, bladder and bowel control, brain development, bone growth, and even cognitive function. The severity depends largely on the type of spina bifida and where along the spine the defect occurs. About 1,278 babies are born with spina bifida in the United States each year, roughly 1 in every 2,875 births.
Types and Why Location Matters
Spina bifida exists on a spectrum. The mildest form, spina bifida occulta, involves a small gap in one or more vertebrae but the spinal cord itself stays protected. It accounts for about 10 to 15% of spinal malformations and is usually discovered by accident on an X-ray. Most people with occulta never have symptoms, though in rare cases it can be linked to a tethered spinal cord, back pain, or subtle neurological changes.
The most severe and common form requiring treatment is myelomeningocele, where the spinal cord and its surrounding membranes push through the opening and are exposed at birth. This is the form responsible for most of the complications described below. There is a strong correlation between where along the spine the defect sits and how much disability a person experiences. A defect high in the thoracic spine (upper back) causes far more widespread paralysis and complications than one in the lower lumbar or sacral region (lower back and tailbone).
Movement and Sensation
People with myelomeningocele typically lose motor control and sensation below the level of the spinal defect. A higher lesion means more of the body is affected. Someone with a defect in the upper back may have little to no leg movement and rely entirely on a wheelchair, while someone with a lower lumbar or sacral defect may walk independently or with braces and crutches.
Long-term survival data illustrates the difference starkly. In a 40-year follow-up of patients whose defects were repaired in infancy, only 17% of those with lesions above the 11th thoracic vertebra were still alive, compared with 61% of those with lesions below the third lumbar vertebra. The higher-lesion group was also significantly less likely to be walking in the community and more likely to develop pressure sores from reduced sensation in the skin.
Brain and Nervous System
Spina bifida doesn’t just affect the spine. Nearly all children born with myelomeningocele also develop a Chiari II malformation, a condition where the lower part of the brain is pulled downward through the opening at the base of the skull. The current understanding is that the spinal defect comes first: because cerebrospinal fluid leaks through the open spine during fetal development, the fluid pressure that normally helps shape the skull and brain is disrupted, and the hindbrain herniates downward.
This brain displacement frequently leads to hydrocephalus, a buildup of cerebrospinal fluid in the brain’s ventricles. Virtually all newborns with thoracic-level defects need a shunt (a thin tube surgically placed to drain the excess fluid), along with about 85% of those with lumbar-level defects and around 70% with sacral-level ones. Shunts can malfunction or become infected over a lifetime, making ongoing monitoring essential. Cerebellar volume, the part of the brain involved in coordination and balance, is also reduced, particularly in people with higher spinal lesions.
Bladder and Bowel Control
The nerves that control the bladder and bowel exit the very lowest part of the spinal cord, so they are affected in nearly all cases of myelomeningocele regardless of lesion level. This is called neurogenic bladder and neurogenic bowel. The bladder may not empty fully on its own, or it may contract unpredictably, leading to incontinence or urine backing up toward the kidneys.
Most people manage neurogenic bladder with clean intermittent catheterization, inserting a thin tube several times a day to drain urine on a schedule. Others benefit from medications that calm overactive bladder contractions, nerve stimulation therapies, or in some cases reconstructive surgery. Bowel management typically involves timed bathroom routines, dietary adjustments, and sometimes irrigation programs to prevent accidents and constipation. These routines become a normal part of daily life, but they require consistency and can affect social confidence, especially for children and teens.
Kidney Health Over Time
Because the bladder doesn’t function normally, the kidneys face chronic stress. Urine that doesn’t drain properly can create back-pressure and recurrent infections, both of which damage kidney tissue over years. Chronic kidney disease affects an estimated 25 to 50% of people with spina bifida. Regular kidney monitoring with ultrasound, typically starting in early childhood and continuing into adulthood, is a core part of long-term care.
Bone and Joint Problems
Muscle imbalance around paralyzed or weakened limbs pulls bones out of alignment as a child grows. Nearly 30 to 50% of individuals with myelomeningocele develop a dislocated hip by the time they reach skeletal maturity, caused by uneven muscle forces and abnormal development of the hip socket. Clubfoot is common at birth, and scoliosis (curvature of the spine) develops frequently, especially in those with higher-level defects. Many of these orthopedic issues require bracing, serial casting, or surgery during childhood to preserve as much function and comfort as possible.
Thinking, Attention, and Learning
Spina bifida affects cognitive development in ways that are often underrecognized. Most people with myelomeningocele have average overall intelligence, but specific thinking skills are commonly impaired. Attention difficulties appear in the majority of individuals, and problems with executive function (planning, organizing, and self-monitoring) have a major impact on daily life. Metacognition, the ability to evaluate your own thinking and adjust your approach to a task, is particularly affected.
Math skills tend to be hit harder than reading. Difficulties with verbal counting, recognizing number symbols, and manipulating quantities show up as early as 36 months, and challenges with calculation and processing speed persist into adulthood. Children with spina bifida often benefit from early educational support, especially structured approaches to math and organizational strategies that compensate for weaker executive function.
Latex Sensitivity
People with spina bifida have an unusually high rate of latex allergy. In one study, about 40% of patients with spina bifida had developed antibodies to natural rubber latex, compared with roughly 12% of children with other allergies and only 2% of healthy controls. The risk rises with the number of surgeries a person has undergone, likely because repeated exposure to latex gloves and medical equipment during operations sensitizes the immune system. For this reason, latex-free environments during any medical procedure are standard practice for this population, and many families avoid latex products at home as well.
How Prenatal Surgery Changes Outcomes
A landmark clinical trial comparing fetal surgery to standard repair after birth found that operating before birth meaningfully improves two of the biggest complications. Children who had prenatal repair were less likely to need a brain shunt by 12 months of age and were better able to walk independently by 30 months. Fetal surgery does not eliminate the effects of spina bifida, but it reduces the severity of hydrocephalus and improves motor function, giving children a measurably better starting point. The procedure carries risks for the mother, including preterm delivery, so it involves careful evaluation of each pregnancy.
Living With Spina Bifida as an Adult
Spina bifida is a lifelong condition, and its effects shift over time. Adults face ongoing risks of kidney deterioration, pressure sores in areas with reduced sensation, shunt complications, and progressive loss of mobility as joints wear down. Weight management becomes increasingly important because reduced physical activity makes it easier to gain weight, which in turn stresses joints and makes transfers and wheelchair use harder. Mental health challenges, including depression and social isolation, are more common in adults with spina bifida than in the general population, partly driven by the cumulative burden of managing a complex condition.
Despite these challenges, most people with spina bifida live into adulthood, and outcomes have improved substantially over the past several decades. The key is consistent, coordinated care that tracks bladder and kidney function, skin integrity, shunt performance, and orthopedic health across the lifespan.