Welcome to the Spina Bifida Resource Center! Helpful videos by medical professionals, in-depth articles and clarity about SB are the useful things you’ll find here. In addition, you’ll find state specific information such as local clinics, charities, camps for children and more. We have everything you need to make your life easier as you begin to learn more about SB.
Guide & FAQ on Adults Living with Spina Bifida
This page contains the most popular questions people have about adults living with Spina Bifida, a type of neural tube defect. On this page, you can find the answers to the most popular questions asked online about this birth defect, including answers to questions that have not been answered yet.
More than half of patients living with Spina Bifida in the USA are adults. Since most of the health care and medical care provider resources are focused on the babies and children with SB, adults living with SB reportedly find that there aren’t enough health care providers who are trained to provide care for grown-up patients living with this type of birth defect.
Table of Contents (Click Here to Show)
What is the life like of an adult with spina bifida?
The life of an adult with spina bifida can depend on the severity of their condition and also on their transition from childhood to adulthood. It is important to begin planning for transitions in childhood so children with SB can live independent lives as adults. A well-planned transition can help young adults with SB manage life on their own like finding new doctors to care for their chronic condition.
The life of an adult with spina bifida can also depend on the bifida care they receive to maintain their health. Due to advanced medical treatments, people with SB can live to adult years and have fulfilling lives. Adults with SB can provide or manage their own care, such as talking to health care professionals, making appointments, ordering medications and supplies, and seeking medical help. 
Dr. Brad Dicianno answers many questions on adults living with Spina Bifida.
What are the challenges of living with spina bifida?
The challenges of living with spina bifida can be learning to take care of their own health needs, finding and using transportation, living outside the parents’ or previous caregiver’s home, developing healthy relationships, and working.
The challenges of living with spina bifida can be present in the lives of adults with this birth defect due to the lack of coordinated care like regular care, follow-up care, and missed treatments. Adults with SB can suffer from secondary complications due to a lack of regular care for adults. They are also most likely to have higher rates of emergency department (ED) admissions.
Based on past studies, patients with SB who had the least consistent medical care had more comorbidities compared to patients with SB who have regular care. 
Can adults with spina bifida live alone?
Adults with spina bifida can live alone as it has been reported that many adults, especially women, with this birth defect can live independently. Based on studies, to make it possible for a person with SB to live alone as an adult, it is important to start the planning for adulthood transition from childhood.
Adults with SB who live alone should notify their treatment team so clinicians can make the right recommendations on counseling services and training programs that can help improve their quality of life and promote their autonomy. 
Dr. Brad Dicianno talks about the neurological complications that occur in adults with spina bifida, along with the signs and symptoms associated with each.
Can you drive with spina bifida?
You can drive with spina bifida as studies show most adults with SB who are not severely affected or severely disabled are able to drive on a daily basis. Young adults with SB need to use transportation safely as this birth defect can cause issues that affect safe driving.
Adults living with SB can have their cars modified by engaging a driver rehabilitation evaluation specialist to identify which modifications are required in the vehicle to make it accessible and suit their condition. 
Video of L1 paraplegic w/ Spina Bifida driving a full size van
Which of the following are Health issues a person with spina bifida might have?
A person with spina bifida might have the following health issues, such as shoulders and back pain and neuropathic pain. Adults living with SB can also have other health issues like neurogenic bowel and neurogenic bladder. People with this birth defect are at a higher risk of suffering from hypertension.
Adults with SB can also suffer from hydrocephalus but it all depends on the type of neural tube defect (NTD) they were born with. Young adults are more at risk for anxiety and depressive symptoms. Studies show young adults with SB are less likely to engage in at-risk behaviors than other young adults of the same age without this birth defect. 
Award Winning Short Documentary – I have Spina Bifida
What treatment options are there for adults with Spina Bifida?
The treatment options for adults with spina bifida are physiotherapy to help them with movement and to prevent the leg muscles from weakening further. People with SB are also advised to go through occupational therapy to help them find practical solutions to problems they can face on a daily basis like getting dressed, using the bathroom, and many more.
Mobility aids are recommended for patients with SB who are unable to use their legs like an electric or manual wheelchair. For people with SB who have weak leg muscles, medical professionals recommend splints, leg braces, and other useful walking aids to help them in their everyday life. 
Can spina bifida be corrected in adults?
Spina Bifida cannot be corrected in adults but through modern medical equipment and technology, the condition of adults with SB can be treated and managed by the right health care team. For any severe case of SB, surgery to close the defect is performed either when the baby is still in the womb or within the first days of life.
The surgery performed on an infant with SB can help to prevent further damage to the spinal cord although the surgery cannot repair the already-damaged spinal cord. Adults with open spina bifida can benefit from regular treatment to neurosurgical care so neurosurgeons can monitor their condition and prevent common issues, such as hydrocephalus, tethered spinal cord, and Chiari malformation from worsening the condition of their SB. 
What kind of specialized care do adults with Spina Bifida need?
The kind of specialized care adults with spina bifida need is a range of professional medical services, such as neurosurgery services, urology services, and physical therapy services. These specialized care professional services help adults living with SB on a daily basis in the best way possible. These services help improve their overall strength, stability, and mobility.
Medical professionals will assess the conditioning of adults living with SB. To help them further, they will also demonstrate exercises, and provide them with the necessary material to perform these exercises at home.
Adults living with SB may also be evaluated to see if they require the assistance of medical equipment, such as leg braces, wheelchairs, and other types of assistive equipment that can help optimize their mobility and movements. 
What happens during the transition to Spina bifida adult care?
During the transition to Spina Bifida adult care, adults with this kind of incurable birth defect and chronic condition go through the typical effects of aging, but at a different and more rapid rate. It can be a time of growth and success but it can also be a difficult time for the adolescence to adulthood transition. According to research, most adults with SB have a hard time establishing and maintaining a normal social life.
(60min Presentation on Aging and Adult Issues with Spina Bifida. Highly suggested that you watch it.)
Doctors suggest that teens with SB need to learn self-mastery and autonomy. Medical professionals recommend that parents should have their teens with SB make their appointments and request medical refills starting at age 14 or 15. Teenagers with this birth defect will then progressively take on more responsibility as they learn to handle the easier tasks.
Patients with SB can still transition to adulthood with various psychological and social problems together with the issues that come with managing their physical symptoms. They can feel more isolated and depressed.
Adults with more severe levels of SB and those with severe difficulties controlling incontinence may not be able to have normal social participation like getting employed, dating, and getting married. Adolescents with SB, they may find transitioning to Spina Bifida adult care difficult due to being unable to obtain the medical support and resources they need. 
Can spina bifida affect you later in life?
Spina Bifida can affect you later in life as this birth defect can cause paralysis, bowel and bladder issues, scoliosis, orthopedic issues, and hydrocephalus (fluid in the brain). Adults living with SB can also suffer from common conditions, such as prediabetes and metabolic syndrome. Patients with limited mobility can become overweight and suffer from obesity due to their decreased ability to burn calories.
As adults with SB grow older, their condition can get worst as the body ages. Muscle paralysis can produce spinal deformity, contractures, and joint dislocations. They can suffer from loss of protective skin that may cause pressure sores (decubiti). They can also eventually suffer from renal failure due to urinary incontinence with attendant frequent bladder infections. 
How does spina bifida affect adults?
Spina Bifida affects adults in many ways related to health and mobility. They can also face serious physical and social consequences of living with SB. Adults living with SB can suffer from paralysis of the lower limbs, shoulder and back pain, and progressing scoliosis.
Adults living with this birth defect can also have, bowel, bladder, and kidney problems and skin breakdown. They can also have learning difficulties and depression.
Patients with SB can experience social isolation with neurologic and intellectual impairment and restrictions on independent living. Adults with this condition can also suffer from orthopedic and urologic consequences of their SB condition and experience limited employment opportunities. 
How long do adults with spina bifida live?
Adults with Spina Bifida can live as long as a person, who doesn’t have a congenital malformation of the spinal cord, can live. It is possible for adults with SB to obtain a normal-to-average life expectancy if they have or get frequent, thorough, and appropriate care.
The number of adults with SB is increasing due to the advancements in medical, surgical, and rehabilitative care.
The medical professionals, who are also known as the treatment teams for adults with spina bifida, can help them live by carefully prescribing their treatment to manage symptoms and prevent their conditions from worsening. 
Can spina bifida occulta cause problems later in life?
Spina Bifida Occulta can cause problems later in life, depending on the severity of this chronic condition. SB Occulta is not discovered until the patient is in late childhood or adulthood. This type of SB does not reportedly cause any disability among patients but there are forms of SB Occulta that can cause problems, such as lipomyelomeningocele and lipomeningocele, thickened terminale, fatty terminale, diastematomyelia, and dermal sinus tract.
What percent of people with spina bifida can walk?
The percentage of people with spina bifida who can walk is higher for babies who have had surgery in the womb. Studies show that performing surgery on babies in the womb who have the most severe form of SB doubles their chance of walking. When the baby with SB is still in the womb, surgery can be performed to seal up the defective spinal cords 19 to 26 weeks before the mother gives birth. 
UAB opens new clinic for adult spina bifida patients
1. Centers for Disease Control and Prevention. (2020, September 3). Living with spina bifida (young adults). Centers for Disease Control and Prevention. Retrieved June 24, 2022, from https://www.cdc.gov/ncbddd/spinabifida/adult.html
2. Mukherjee, S., & Pasulka, J. (2017). Care for adults with spina bifida: Current state and Future Directions. Topics in spinal cord injury rehabilitation. Retrieved June 24, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5672883/
3. Adults Living With Spina Bifida. Spina Bifida Association. (2021, September 21). Retrieved June 24, 2022, from https://www.spinabifidaassociation.org/adults/
4. Roach, J. W., Short, B. F., & Saltzman, H. M. (2011, May). Adult consequences of SPINA BIFIDA: A cohort study. Clinical orthopaedics and related research. Retrieved June 24, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069297/
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7. Spina bifida. Columbia Neurosurgery in New York City. (2021, July 21). Retrieved June 24, 2022, from https://www.neurosurgery.columbia.edu/patient-care/conditions/spina-bifida
8. Spina bifida in adults. Spina Bifida Treatment for Adults, Salt Lake City, Utah | University of Utah Health. (n.d.). Retrieved June 24, 2022, from https://healthcare.utah.edu/neurosciences/neurosurgery/adult-spina-bifida/
9. Lim, S.-W., & Yi, M. (2021, January 8). Illness experiences of adults with spina bifida: Protecting the whole self. Asian Nursing Research. Retrieved June 24, 2022, from https://www.sciencedirect.com/science/article/pii/S1976131720301110
10. Adult Spina Bifida Resources – Spineuniverse. (n.d.). Retrieved June 23, 2022, from https://www.spineuniverse.com/conditions/spinal-disorders/spina-bifida/adult-spina-bifida-resources
11. Adult Spina Bifida Clinic – Physical Medicine & Rehabilitation. UPMC. (n.d.). Retrieved June 24, 2022, from https://www.upmc.com/services/rehab/physical-medicine-rehab/conditions/spina-bifida
12. Spina bifida in adults. Spina Bifida Treatment for Adults, Salt Lake City, Utah | University of Utah Health. (n.d.). Retrieved June 24, 2022, from https://healthcare.utah.edu/neurosciences/neurosurgery/adult-spina-bifida/
14. Person. (2011, February 10). Surgery in the womb doubles spina bifida babies’ chances of walking. The Sydney Morning Herald. Retrieved June 24, 2022, from https://www.smh.com.au/lifestyle/health-and-wellness/surgery-in-the-womb-doubles-spina-bifida-babies-chances-of-walking-20110210-1aoly.html
Through our content we want to empower the lives of people with SB and to promote the prevention of it through education, public awareness and research. Working together with local organizations we aim to enhance the lives of those who are affected with SB. We want to build a stronger community and create a better future for those with SB.