Spina bifida is a congenital neural tube defect that occurs when the spine and spinal cord do not form properly during early pregnancy, resulting in varying degrees of nerve damage. Because this condition is present from birth, many people wonder if the damage progresses over time. The primary neurological injury caused by spina bifida is static, meaning the initial deficit does not actively deteriorate. However, individuals can experience new or worsening symptoms as they age due to secondary health complications and lifelong mechanical stresses.
Understanding the Non-Progressive Nature of Spina Bifida
The fundamental neurological damage resulting from spina bifida is fixed at the time of birth, or after initial surgical repair. Unlike conditions such as multiple sclerosis or amyotrophic lateral sclerosis, the initial paralysis or loss of sensation established early in life typically remains stable. This primary defect is a structural issue from incomplete closure of the neural tube, not an ongoing disease process attacking the nervous system. The level of function or paralysis is largely determined by the location of the spinal lesion.
The goal of early neurosurgery, often performed shortly after birth, is to close the defect and protect the exposed spinal cord and nerves from further injury. This early intervention stabilizes the existing damage and minimizes the risk of infection. The neurological picture established in early childhood serves as the baseline for the person’s functional capacity.
Secondary Health Complications That Appear Later
While the initial damage is static, new or worsening symptoms can appear in childhood or adulthood, which may mistakenly suggest the underlying condition is progressing. These changes are typically due to specific, treatable mechanical or functional complications, not the spina bifida defect itself. The most common of these issues involves the spinal cord becoming anchored to surrounding tissue, known as Tethered Cord Syndrome.
Tethered Cord Syndrome occurs when scar tissue, often from the original back closure surgery, attaches the spinal cord to the surrounding spinal canal. As the individual grows, this scar tissue prevents the spinal cord from moving freely and causes it to stretch, which disrupts blood flow and nerve signals. Symptoms often emerge during growth spurts and can include new or increased back and leg pain, worsening weakness or numbness in the legs, and a decline in bladder or bowel function. Untethering the spinal cord through a surgical procedure can often stabilize or improve these symptoms, confirming the issue was a mechanical complication rather than disease progression.
Another complication that can mimic a decline is the malfunction of a ventriculoperitoneal shunt, a device used to drain excess cerebrospinal fluid caused by hydrocephalus. Hydrocephalus affects a large percentage of people with the most severe form of spina bifida, and the shunt relieves pressure on the brain. A shunt can become infected, blocked, or fail over time. When a shunt malfunctions, the resulting acute buildup of fluid can cause symptoms like severe headaches, vomiting, changes in vision or concentration, and a rapid decline in neurological function. These are reversible and treatable events, representing a shunt failure, not a worsening of the spina bifida itself.
Lifelong Management and Transition to Adult Care
As individuals with spina bifida age, distinct health challenges arise from the cumulative wear and tear on organ systems and the long-term effects of physical impairment. One significant concern is the health of the renal system, due to the neurogenic bladder caused by nerve damage. A neurogenic bladder may lead to high pressure, causing urine to backflow toward the kidneys, resulting in scarring and chronic kidney damage. Regular monitoring by a dedicated adult urologist or nephrologist is important to prevent renal failure, which remains a leading cause of illness and death in this population.
Musculoskeletal issues also become more prominent, as the body adapts to altered mobility and weight-bearing stresses over decades. Long-term mechanical stresses can cause the progression of orthopedic issues, such as scoliosis, joint deterioration, and contractures, which can impact mobility and comfort. Ongoing physical therapy and orthopedic maintenance, including bracing or surgery, are necessary to manage these physical changes.
The shift from comprehensive pediatric care to the adult healthcare system presents a unique challenge that can indirectly contribute to a perceived decline in health. Pediatric clinics typically offer multidisciplinary care with specialists who understand the complexity of spina bifida, but this coordinated approach is fragmented in adult medicine. Proactive health maintenance, including consistent bowel and bladder management, is crucial to prevent deterioration and maintain quality of life. Successful transition requires the individual to develop self-management skills and find adult providers interested in coordinating care for this complex, multisystem condition.