Spina bifida is a complex birth defect involving the incomplete development of the spinal cord and its protective coverings, necessitating lifelong, specialized medical attention. Because the condition affects the nervous system, management requires a dedicated team of doctors and licensed professionals. No single physician can treat all aspects of spina bifida; instead, care is delivered through a coordinated, multidisciplinary approach that shifts focus as the patient moves from infancy through adulthood. This specialized team works to address the immediate defect, manage chronic complications, and maximize physical function.
Initial Treatment and Neuro-Management Specialists
The initial care for spina bifida is led by a pediatric neurosurgeon, whose primary role is the immediate correction of the spinal defect, often within the first 48 hours after birth. This procedure involves carefully placing the exposed spinal cord and nerves back into the spinal canal and closing the opening to prevent infection and limit further nerve damage. This essential surgery cannot repair nerve damage that occurred during development, making ongoing management of the nervous system a continuous concern.
A common complication is hydrocephalus, a buildup of cerebrospinal fluid (CSF) in the brain that requires management by the neurosurgeon. The standard procedure involves implanting a shunt, a thin tube that diverts excess CSF from the brain to the abdomen, where it is safely absorbed. Shunts sometimes malfunction or become infected, requiring the neurosurgeon to perform revisions or replacements throughout the patient’s lifetime.
Neurosurgeons also monitor for tethered cord syndrome, where the spinal cord becomes abnormally attached to surrounding tissues, causing it to stretch as the child grows. This stretching can cause pain, muscle weakness, and a decline in bladder and bowel function, necessitating a surgical procedure to release the cord. A neurologist may also be involved to manage nervous system issues, such as seizures or problems with general nerve function.
Doctors Addressing Urological and Orthopedic Complications
Damage to the spinal nerves often prevents the bladder and bowel from functioning correctly, requiring specialists focused on internal organ systems. The urologist plays a central role in managing the neurogenic bladder, which is bladder dysfunction due to nerve damage. The urologist’s primary goal is to preserve kidney function by ensuring the bladder remains a low-pressure reservoir, preventing the backflow of urine that can cause long-term damage and scarring.
Management often involves clean intermittent catheterization (CIC) and medications to control bladder pressure. The urologist may also perform surgical procedures to reconstruct or enlarge the bladder to achieve continence and protect the upper urinary tract. A nephrologist, specializing in kidney health, may join the team to monitor the kidneys for signs of damage or chronic kidney disease, as renal complications are a significant concern in adulthood.
The orthopedic surgeon focuses on the skeletal and muscular issues that result from nerve damage and muscle imbalances. These surgeons manage common complications like scoliosis (curvature of the spine), hip dislocations, and foot deformities such as clubfoot. Their interventions, which can include bracing, casting, or surgery to lengthen tendons or correct bone alignment, are designed to minimize deformity and maximize the patient’s mobility. Orthopedic care involves regular monitoring of the spine and limbs as the child grows, with the goal of improving function, whether that means walking or simply sitting comfortably.
Professionals Supporting Function and Development
Beyond surgical and chronic organ management specialists, other professionals focus on maximizing the patient’s independence and developmental potential. The physiatrist, or Physical Medicine and Rehabilitation (PM&R) doctor, specializes in rehabilitation medicine. This doctor oversees the entire rehabilitation plan, prescribing mobility equipment like braces, orthotics, or wheelchairs, and coordinating necessary therapies. The physiatrist often acts as a generalist, uniting the work of surgical specialists with the hands-on therapists.
The developmental pediatrician specializes in the assessment and management of developmental, behavioral, and educational issues, which are common in patients with spina bifida, especially those with shunted hydrocephalus. This specialist works with children to address learning needs and behavioral issues that may arise. The treatment plan is implemented by licensed professionals, such as physical therapists and occupational therapists, who provide hands-on interventions to improve strength, coordination, and the ability to perform daily tasks.
Structuring Multidisciplinary Care
Because many different doctors and therapists are involved, spina bifida care is best managed within a specialized multidisciplinary clinic structure. These clinics bring a range of specialists—including neurosurgery, urology, orthopedics, and physiatry—together to see the patient during a single, coordinated visit. This centralized model promotes real-time communication between providers, ensuring that one specialist’s treatment does not conflict with another’s.
The overall coordination of care is managed by a primary care pediatrician or a dedicated nurse or care coordinator within the clinic. This coordinator serves as the central hub, helping the family navigate the complex schedule of appointments and ensuring that all test results and treatment plans are shared across the team. As the patient approaches adulthood, the clinic facilitates the transition from pediatric specialists to adult-focused care teams, ensuring continuity of management.