For Teachers & Professionals

Spina Bifida and Sexuality

Spina bifida is a birth defect that occurs when the spine and spinal cord don't form properly. It is a type of neural tube defect. The neural tube is the structure in a developing embryo that eventually becomes the baby's brain, spinal cord and the tissues that enclose them. In babies with spina bifida, a portion of the neural tube doesn't close or develop properly, causing problems in the spinal cord and in the bones of the spine. Spina bifida can range from mild to severe, depending on the type of defect, size, location and complications. Spina bifida is the most common permanently disabling birth defect. Life expectancy in the last decade has improved greatly. Now a lot of adults are living with SB, so the interest in quality of life has been growing.

Studies have shown that over half of adult men and women with SB are sexually active and that most who are not sexually active are nonetheless interested.

There are two features of SB that have the potential to impact sexual function:

1. The neural tube lesion: it is important to consider both the level and the type of lesion. Patients with the same level of lesion may experience different functioning, having a variable motor and sensory function. Also, usually less severe types of lesions bring less impairment. Myelomeningocele is the most severe form, occurring when the spinal cord is exposed outside of the skin through an opening in the spine. Meningocele describes a lesion where spinal fluid and meninges, but no neural elements, are exposed. SB occulta is the mildest form in which there are only vertebral abnormalities. People with SB have variable physical disabilities (from the ability to ambulate without assistance to requiring a wheelchair). There is also a wide range of bladder involvement. Some people with SB also have pelvic instability, severe scoliosis, contractures, faecal incontinence, and pelvic organ prolapse, which have the potential to impact sexual function.  

2. Neurological involvement: this may impact the typical sexual response in several ways. The ability to achieve and maintain an adequate erection and experience forceful ejaculation for men, achieve vaginal lubrication for women, and attain an orgasm for both men and women requires complex integration of the central and peripheral nervous system. 

Sexual desire is the least impacted area of sexual functioning, indicating the importance of providing counselling to patients about sexual health and asking about any concerns, regardless of mobility, level of lesion, or hydrocephalus status.

In order to discuss sexual-related topics with spina bifida patients, doctors might follow the Spina Bifida Sexual Health and Education Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The guidelines can be easily downloaded from the internet and follow all age groups suggesting the appropriate clinical questions and topics to address. Here are briefly reviewed its main aims:

1. Optimize sexual health outcomes for individuals with spina bifida.

This is done by increasing knowledge of sexual health specific to spina bifida and by improving satisfaction with sexuality and sexual relationships. 

2. Maximize the ability of adults with spina bifida to participate as desired in meaningful and fulfilling sexual relationships.

Sexual education must be provided through all the different stages of life.

3. Empower individuals with spina bifida to seek knowledge and skill building.

Strategies to encourage self-acceptance and autonomy are particularly relevant for people with disabilities. By taking the actions recommended, individuals with SB will be more likely to achieve the desired goals of optimal sexual health outcomes, maximizing the ability of adults with SB to participate as desired in meaningful and fulfilling sexual relationships. 

REFERENCES

Deng, N., Thirumavalavan, N., Beilan, J., Tatem, A., Hockenberry, M., Pastuszak, A., & Lipshultz, L. (2018). Sexual dysfunction and infertility in the male spina bifida patient. Translational Andrology And Urology, 7(6), 941-949. doi:10.21037/tau.2018.10.08 

Houtrow, A., & Roland, M. (2020). Sexual health and education guidelines for the care of people with spina bifida. Journal of pediatric rehabilitation medicine,13(4), 611–619. https://doi.org/10.3233/PRM-200743

Lassmann, J., Garibay Gonzalez, F., Melchionni, J. B., Pasquariello, P. S., Jr, & Snyder, H. M., 3rd (2007). Sexual function in adult patients with spina bifida and its impact on quality of life. The Journal of urology, 178(4 Pt 2), 1611–1614. https://doi.org/10.1016/j.juro.2007.03.162 

Spina bifida - Symptoms and causes. (2022, January 8). Mayo Clinic. Retrieved September 9, 2022, from https://www.mayoclinic.org/diseases-conditions/spina-bifida/symptoms-causes/syc-20377860

Sexual Health and Education Guideline. (n.d.). Spina Bifida Association. Retrieved September 11, 2022, from https://www.spinabifidaassociation.org/resource/sexual-health/#0-11-months