The Role of Urology in Spina Bifida Care

Spina bifida is one of the most common congenital disabilities affecting the central nervous system. It affects roughly 1 in 2,875 births in the United States each year, and happens when the spinal column doesn’t fully close during early development in the womb, affecting nerves, muscles, and organs in different ways.¹

The condition ranges in severity, with the most common types being spina bifida occulta (mild and often unnoticed), meningocele (involving a fluid-filled sac without nerve involvement), and myelomeningocele (the most severe, where the spinal cord and nerves protrude into a sac, often causing significant disability).

Oftentimes, when people think of spina bifida, they picture its most severe form, myelomeningocele, because it requires the most intensive care. Neurosurgeons, rehabilitation doctors, orthopedists, and urologists are just a few of the professionals who may be part of the medical team.

Thanks to medical advances, more children with spina bifida are surviving into adulthood than ever before, which makes ongoing, coordinated care even more important. Because the nerves that control the bladder and kidneys may be disrupted, individuals with spina bifida, from mild to severe, are at risk for urinary tract infections, bladder dysfunction, and even kidney damage.

Impact of Spina Bifida on Urologic Care

The urinary system is one of the most affected areas in spina bifida, and protecting kidney health is a lifelong priority for many individuals living with the condition. Because the lower spinal nerves may not fully connect with urinary system components, many individuals experience a neurogenic bladder, a condition in which the bladder cannot store or empty urine normally. About 90% of these individuals with spina bifida will need treatment for bladder dysfunction at some point.²

One of the main concerns is “lower urinary tract hostility,” a phrase used to describe bladder and urethral conditions that can place the kidneys at risk. High bladder pressures, incomplete emptying, or involuntary bladder contractions increase the risk of hydronephrosis (swelling of the kidney due to urine buildup), recurrent urinary tract infections, and long-term kidney damage.³

Urologic care generally follows one of two philosophies. Some programs take a proactive approach, identifying children at risk for upper urinary tract damage and starting interventions early to prevent complications. Others take a reactive approach, closely monitoring the urinary system and beginning treatment only when problems appear.³ Both approaches aim for the same outcomes: preserving kidney function, preventing infections, and supporting urinary continence and independence.

Identifying and preventing complications starts at birth. The urologist’s primary goals are to monitor the urinary tract, help the patient maintain a bladder that empties, and take measures to ensure the bladder remains at a safe, low pressure as the child grows in order to protect the kidneys.⁴ Bladder pressure can be influenced by detrusor muscle overactivity, sphincter resistance, and abnormal coordination between the bladder and urethra. (The detrusor muscle is the smooth muscle that makes up the wall of the bladder.)

Early interventions typically include clean intermittent catheterization (CIC), a process in which a thin, flexible catheter is inserted into the bladder at regular intervals to empty urine. CIC helps maintain low bladder pressures, prevents urine from pooling, and reduces the risk of infections.⁴

Medications such as anticholinergics may also be prescribed to relax the bladder muscle and improve storage function.⁴ Anticholinergics block the action of a neurotransmitter called acetylcholine in the nervous system. In the bladder, acetylcholine is what tells the detrusor muscle (the bladder wall) to contract. By blocking this signal, anticholinergics relax the bladder, allowing it to hold more urine at lower pressures and reducing involuntary contractions.

Even with careful management, some children may require surgical reconstruction when medical therapy alone isn’t enough. Surgical procedures can reshape or augment the bladder, improve storage and emptying, and reduce high pressures that threaten kidney health.⁴

One aspect of care involves preventing infections and further urinary tract and kidney damage, while another focuses on supporting self-care and social independence. As children grow, urologic milestones build on one another: maintaining normal kidney function in early childhood lays the groundwork for achieving continence at school age, which then supports the transition to self-managed care in adolescence.⁵ Consistent, lifelong collaboration between patients, families, and urologists is paramount to achieving a best-case scenario.

Renal Issues Progressing Through Life

Even when the urinary system is carefully managed, kidney complications are a potent risk for people with spina bifida throughout their lives. Early imaging studies indicate that most newborns have essentially normal kidneys; however, the way the bladder functions over time can significantly impact kidney health in later years.⁶

Beginning in infancy, renal ultrasounds can be used to assess the kidneys for swelling or structural abnormalities, while nuclear medicine scans, such as DMSA, can detect scarring that may not be visible on ultrasound. Imaging studies, combined with laboratory tests such as serum creatinine or cystatin C, help track kidney health and detect early signs of damage as the baby grows. Studies suggest that historically, up to 50% of children with untreated bladder issues developed upper urinary tract damage within the first five years of life.⁶

Because spina bifida is a lifelong condition, kidney surveillance continues into adulthood. Even adults who had normal kidneys as infants may develop chronic kidney disease later, making regular follow-up with a urologist and/or nephrologist essential.⁷ Each stage – from infancy, to school age, to adolescence, and into adulthood – builds on the last. Proper management not only prevents irreversible damage but also supports independence, continence, and the ability to engage more fully in daily life, both physically and emotionally.

Compliance with CIC, being consistent with medications, and adhering to regular follow-ups with healthcare providers (including lab and imaging studies) has the biggest impact on maintaining bladder function. Because of the close proximity of the bladder to the gastrointestinal tract, severe constipation due to neurogenic bowel (the analog to a neurogenic bladder) is common in spina bifida patients. The degree of constipation often causes the colon to crowd the bladder out of the pelvis and increases bladder pressure due to direct contact. Often more intense constipation management through a dedicated bowel regimen prescribed by a urologist is needed.

While the foundation of kidney protection in spina bifida is medical management, there are lifestyle factors that can work in conjunction to help stave off chronic kidney issues for as long as possible. Drinking enough water helps dilute urine, flush out bacteria, and reduce the risk of developing stones or experiencing recurrent infections. Staying hydrated can also help improve bowel motility. Regular physical activity within one’s ability improves circulation, bowel function, and overall health, all of which indirectly support bladder and kidney function.

Coordinated Care for Lifelong Health

Managing spina bifida is a lifelong process that works best when patients have a coordinated medical team in place. Urologists collaborate with a host of medical providers to protect kidney function, manage bladder activity, and support overall health. The objective is to help facilitate independence and improve quality of life.⁸

Long-term kidney and urinary tract protection stems from early intervention, careful monitoring, and individualized treatment, with each stage of life bringing new priorities – from preserving kidney function in infancy, to achieving continence in school age, to supporting self-managed care in adolescence and adulthood.

Spina bifida comes with a spectrum of severity, and the need for urologic care often depends on the type and timing of symptoms. If you or a loved one is navigating spina bifida and has questions about urinary or kidney health, Georgia Urology is here as a resource. Our team is available to provide guidance, answer questions, and deliver the care and support needed at every stage of life.

References:

1. Centers for Disease Control and Prevention. (2025, January 2). About Spina Bifida. CDC – Spina Bifida. https://www.cdc.gov/spina-bifida/about/index.html.
2. Tanaka, S. T., Paramsothy, P., Thibadeau, J., Wiener, J. S., Joseph, D. B., Cheng, E. Y., Tu, D., Austin, C., Koh, C. J., Wallis, M. C., Walker, W. O., Smith, K. A., Routh, J. C., & Baum, M. A. (2019). Baseline Urinary Tract Imaging in Infants Enrolled in the UMPIRE Protocol for Children with Spina Bifida. The Journal of urology, 201(6), 1193–1198. https://doi.org/10.1097/JU.0000000000000141.
3. Joseph, D. B., Baillie, S., Baum, M. A., Frimberger, D. C., Khavari, R., Misseri, R., Tanaka, S. T., Wood, H., & Yerkes, E. B. (2023, May). Urology Guideline. Spina Bifida Association. https://www.spinabifidaassociation.org/resource/urology/.
4. Clayton, D. B., & Brock, J. W., 3rd (2010). The urologist’s role in the management of spina bifida: a continuum of care. Urology, 76(1), 32–38. https://doi.org/10.1016/j.urology.2009.12.063.
5. Joseph, D. B., Baillie, S., Baum, M. A., Frimberger, D. C., Khavari, R., Misseri, R., Tanaka, S. T., Wood, H., & Yerkes, E. B. (2023, May). Urology Guideline. Spina Bifida Association. https://www.spinabifidaassociation.org/resource/urology/.
6. Joseph, D. B., Baum, M. A., Tanaka, S. T., Frimberger, D. C., Misseri, R., Khavari, R., Baillie, S., Yerkes, E. B., & Wood, H. (2020). Urologic guidelines for the care and management of people with spina bifida. Journal of pediatric rehabilitation medicine, 13(4), 479–489. https://doi.org/10.3233/PRM-200712.
7. Tanaka, S. T., Paramsothy, P., Thibadeau, J., Wiener, J. S., Joseph, D. B., Cheng, E. Y., Tu, D., Austin, C., Koh, C. J., Wallis, M. C., Walker, W. O., Smith, K. A., Routh, J. C., & Baum, M. A. (2019). Baseline Urinary Tract Imaging in Infants Enrolled in the UMPIRE Protocol for Children with Spina Bifida. The Journal of urology, 201(6), 1193–1198. https://doi.org/10.1097/JU.0000000000000141.
8. Moussa, M., Papatsoris, A. G., Chakra, M. A., Fares, Y., Dabboucy, B., & Dellis, A. (2021). Perspectives on urological care in spina bifida patients. Intractable & rare diseases research, 10(1), 1–10. https://doi.org/10.5582/irdr.2020.03077.