August 7, 2026
Spina bifida is one of the most common birth defects affecting the spine and nervous system, and thanks to advances in surgical care and long-term follow-up, most children born with it today go on to lead full, active lives. That said, spina bifida is not a condition that is treated once and then set aside. It requires ongoing, coordinated monitoring throughout childhood and often into adulthood, particularly because of a related concern called tethered cord syndrome that can develop or worsen over time. Understanding what to watch for helps families and their medical teams catch problems early, when treatment is most effective.
Spina bifida occurs when the spinal column does not close completely during early fetal development, leaving part of the spinal cord and its coverings exposed or improperly formed. The severity ranges widely, from mild forms that may never cause symptoms to more significant forms involving visible defects and significant nerve involvement requiring surgery shortly after birth. Most children with spina bifida undergo an initial surgical repair, but this repair addresses the structural defect. It does not eliminate the need for lifelong monitoring of the spinal cord and nerve function as the child grows.
Tethered cord syndrome occurs when the spinal cord becomes abnormally attached to surrounding tissue, restricting its normal movement within the spinal canal. This is common after spina bifida repair, since scar tissue can form at the surgical site. As a child grows, the spinal cord needs to move somewhat freely within the canal, and a tethered cord can be stretched with growth, leading to progressive nerve damage. This is one of the main reasons children with repaired spina bifida need regular, structured follow-up even when they appear to be doing well.
Because tethered cord can develop gradually, parents and caregivers should watch for a specific set of changes rather than waiting for an obvious crisis. These include new or worsening weakness in the legs, changes in walking pattern or increased frequency of falls, new or worsening bowel or bladder problems, back pain, especially pain that is worse with growth spurts, and changes in foot shape or increasing spinal curvature. Because many of these children already manage some degree of bowel, bladder, or mobility involvement from birth, families are encouraged to track a baseline and report changes from that baseline rather than assuming new symptoms are simply part of the underlying condition.
A typical monitoring plan includes regular visits with a pediatric neurosurgeon, often paired with urology and orthopedic follow-up given how interconnected these systems are in spina bifida. Visits become more frequent during periods of rapid growth, such as early childhood and adolescence, since these are the times when a tethered cord is most likely to become symptomatic. Imaging, usually an MRI, is used selectively rather than on a fixed schedule, most often when there is a specific clinical concern or a notable change in symptoms. A baseline neurological exam, including strength testing, reflexes, and gait assessment, gives the care team a reference point to compare against at each visit.
Not every case of tethered cord requires surgical release. The decision depends on whether the child is showing progressive symptoms, since surgery carries its own risks and is generally reserved for cases where nerve function is actively declining. When surgery is recommended, the goal is to release the tethering and stabilize nerve function, though it is important for families to understand that surgery aims to halt progression and, in some cases, improve function, rather than guaranteeing a full reversal of existing symptoms. This is why catching changes early, before significant nerve damage accumulates, makes such a meaningful difference in outcomes.
As children with spina bifida move into adolescence and adulthood, the focus of monitoring shifts but does not disappear. Bone growth slows, reducing but not eliminating the risk of new tethering, while other concerns such as long-term mobility, independence, and transition to adult care providers become more prominent. A coordinated care team that follows a child from early childhood through this transition helps ensure that important warning signs are never dismissed as unrelated or outgrown.
Consistent, long-term monitoring is the best way to catch tethered cord symptoms before they progress. Call (866) 467-1770 to speak with our specialists, or Request a Consultation Online to schedule a check-up.