Spina bifida (SB) remains the most common, permanently disabling birth defect affecting the central nervous system. It is a term used to described an array of neural tube defects including myelomeningocele, lipomyelomeningocele, diastematomyelia, and other congenital anomalies of the spine. SB occurs in 8 out of 10,000 live births and the majority of these individuals are expected to live well into adulthood.¹ Children born with SB have varying degrees of lower extremity paralysis, and bladder and bowel dysfunction based on the level of their defect and spinal involvement. They may also have hydrocephalus, scoliosis, and skin breakdown.

Despite their health challenges, as individuals with SB age, their desire for intimate relationships develops in a typical pattern to that of their nondisabled peers. Unfortunately, many young adults with SB assume that information taught at school about sexual education does not apply to them. They have difficulty accessing sexual education that can address their specific health concerns and barriers, leaving them vulnerable to misconceptions, abuse, and lower self-confidence. This article hopes to address special sexual considerations and current research efforts to promote sexual health in this population.

From adolescence into young adulthood, patients with SB are presented with unique physical, mental, and social challenges regarding sexual health and function. Patients with SB often have short stature and other orthopedic conditions which may make gynecologic examinations and vaginal deliveries difficult, and certain sexual positions painful for them or their partners. Women with limited manual dexterity may have trouble applying tampons or menstrual pads and maintaining good hygiene during menstruation. These patients also have latex intolerance, which make numerous birth control options contraindicated, such as condoms and diaphragms. In addition, many of these patients have had prior urinary tract reconstructive and bowel continence surgeries by adulthood, complicating any cesarean deliveries. And because there is a misconception that patients with physical disabilities are asexual, these patients are often subjects of sexual harassment and abuse.²

Increasing awareness of the importance of reproductive education within the SB community has captured the attention of numerous medical specialties. Studies such as Streur et al reveal that women with SB report an overall poor understanding of their current reproductive health and potential.³ This study also reveals that many women with SB did not feel supported by their physicians before, during, or after their pregnancies. In particular, these women reported feeling unprepared for pregnancy citing a lack of sufficient education from their health care providers. A study from Tong and Tanaka echoes this same theme regarding lack of reproductive education among women with SB, particularly regarding fertility and the hereditary aspects of SB.⁴ Unfortunately, physicians feel similarly ill-prepared to educate this population and finding the optimal timing to initiate discussions regarding sex and fertility.⁵ In our qualitative interview study on SB women with successful pregnancies, only 1 out of 6 interviewed women reliably consumed folic acid prior to their pregnancy, when it is well-recommended by the American College of Obstetricians and Gynecologists that all women with SB should consume a higher dose of folic acid at least 1 to 3 months prior to conception.⁶

Likewise, men with SB overwhelmingly report a lack of sexual education. Roth and colleagues reported that 55% of men could not recall ever speaking with a physician about sexual maturity, and 92% of men believed that physicians should begin discussing sexual health with adolescents.⁷ Up to 75% of men with SB have erectile dysfunction and, unfortunately, most treatment options have been extrapolated from sexual medicine literature on adult men with spinal cord injury, which may not adequately address all the other anatomical issues that are associated with SB.⁸ This further highlights the importance of providing men with adequate information regarding sexual health.

Because of this, our multidisciplinary adult SB clinic has started an investigation on what these patients understand and experience regarding sexual activity and safe sex practices, sexually transmitted infections, pregnancy, and conception. A 40-part de-identified survey was designed by our transitional SB multidisciplinary team, which includes input from parents of SB children as well as adult SB patients. Our prospectively maintained database has had over 50 respondents in the past year, and when queried regarding concerns during sex, 40% expressed fears of incontinence during sexual activity, and the most perceived barrier to intimacy for these patients is issues with mobility or positioning. Only 40% of women believed they could get pregnant because of SB. Regarding sexual education, only 25% of males and 31% of females learned about sex from a medical provider; the vast majority learned from school, friends, or family.

Determining the level of education regarding sexual and reproductive health is a crucial first step in improving the multidisciplinary care that these adult patients need. A vast majority of SB patients live a sexually active lifestyle, but they continue to have perceived barriers and concerns that are unique to their condition. We believe that there is an incredible need to research, educate, and promote healthy sex in this population. A multidisciplinary approach should be considered to provide a more holistic approach in creating a tailored sex counseling and health care plan for these patients, which will help address their challenges and minimize unwanted sexual experiences and intimate partner violence.