Adult Spina Bifida Care
Thanks to advances in research and technology, now more than ever, individuals born with spina bifida have the prospect of a radically better quality of life compared with what was historically possible.
With proper care and treatment, those faced with even severe forms of this condition can enjoy a higher level of function and independence – and a much longer life. These advances present a challenge, however, given that most doctors who treat spina bifida do so in a pediatric setting and few adult physicians are sufficiently familiar with the condition.
The Adult Spina Bifida Clinic at RIC is an effort to bridge this service gap for adults living with spina bifida. With its team approach to care, RIC offers the level of expertise and quality of care to help you achieve the best life possible.
How RIC helps people with spina bifida
Working with specialists from the Spina Bifida Program at Children's Memorial Hospital, RIC offers a variety of services and resources designed to help individuals with spina bifida transition from pediatric care to adult care.
RIC offers an Adult Spina Bifida Clinic, a multidisciplinary clinic for adults with spina bifida. The clinic includes specialist physicians in neurosurgery, urology, orthopaedics, and physiatry (the specialty in physical medicine and rehabilitation).
This clinic is offered on the first Friday morning of each month on the third floor of RIC's flagship hospital at 345 E. Superior Street in Chicago. Because space is limited, appointments should be scheduled at least three to four months in advance. Valet parking is available at the east entrance of RIC, and reduced rates are available at two parking garages, located at 321 E. Erie St. and 227 E. Huron.
For more information on scheduling an appointment in the RIC Adult Spina Bifida Clinic, please call 1-800-883-3931.
The RIC Adult Spina Bifida Clinic offers assistance on the following areas:
Mobility (walking and wheelchair)
If your leg muscles are affected, it may be harder to walk, or it may take more energy. This may mean you cannot walk as far or as fast as someone with healthy leg muscles. As you grow taller or put on weight, it may be harder to keep up with others or have enough energy to do so. For this reason, some people choose to use a wheelchair or scooter for longer distances. RIC's Wheelchair Seating and Positioning Center can help ensure maximum comfort, health and mobility.
Osteoporosis and fractures
Osteoporosis means the bones are more breakable. Bones tend to be thin in people who have weak muscles in their legs and don’t stand or walk much. This may mean that a minor injury results in a broken bone. The most common place to break the bone is in the thigh above the knee. Fractures may not cause pain for people with spina bifida, and the signs of a broken bone may only be redness or swelling of the leg.
Bones thicken until the mid-30s, then tend to get thinner over time. It is important to consume enough calcium and vitamin D, especially while you are young, to help maximize bone strength. Talk to a doctor or dietician about whether you need extra calcium and vitamin D. Exercise helps to maintain bone strength as well, especially standing or walking, for those who can.
Obesity is a common health issue for young people with spina bifida. If you have small muscles in your legs, you need many fewer calories and have to eat less than someone else your age or size to maintain your weight. Speak with your doctor if you have questions regarding your weight and diet.
Pressure sores occur when the skin gets pinched between two hard surfaces (like bone and a hard seat) and loses blood supply for too long. Pressure sores occur in areas of skin where you don’t have normal feeling, so your body doesn’t tell you there is a problem. You are more prone to getting pressure sores if you have other illnesses, infections or fevers. Too much moisture and friction on the skin can also cause pressure sores. RIC's LIFE Center provides information on preventing and treating wounds.
Many people with spina bifida have problems controlling their bowels. With discipline, you can regulate your bowels to move more regularly, which can lessen the chance of “accidents” or incontinence.
Clean intermittent catheterization is a good way to empty the bladder if the bladder does not empty completely on its own. If you have frequent infections, you may want to review your catheterizing technique with a nurse. Your urologist will suggest regular tests to monitor the health of your kidneys.
If you have difficulty catheterizing, the Mitrofanoff procedure can help you become more independent. This procedure creates an opening from the bladder to the belly button (umbilicus or navel), through which you can catheterize. If you want more information, please speak with your urologist.
All people with spina bifida are considered latex-allergic. Latex allergy can begin at any age, even if you have not had problems with it before. Symptoms may include a rash, sneezing, watery eyes, runny nose or severe breathing difficulty. The Spina Bifida Association has developed a list of items (PDF) that contain latex as well as latex-safe alternatives.
Primary and preventative care
Regular health check-ups with a primary care doctor are important for everyone. Women who are sexually active or older than 21 should have regular gynecological exams. Both men and women should have regular exams for preventative health care.
Regular exercise is important for everyone. Visit www.ncpad.org for more information on ways to stay fit and have fun. You can also join RIC's Wirtz Sports Program .
Education and work
Know what accommodations you need to succeed in school or at work and ask for them. Discuss your future plans with your teachers, guidance counselor, employer and family.
You may want to discuss your future education and work goals with your spina bifida team. Summer and part-time jobs, as well as volunteer work, can give you great work experiences that are valuable for your future and add to your resume. If you are already working, it is important to understand any accommodations you need in order to continue being successful. For more information, read about RIC's Vocational Rehabilitation and Assistive Technology programs.
Depression is common for people with spina bifida. If you find you feel sad most of the time, have difficulty sleeping, do not have an appetite or an interest in the activities you enjoyed before, talk to your doctor.
Sexual function (and sexuality), contraception and fertility
Anyone who is sexually active must be responsible about pregnancy and sexually transmitted disease. You can talk to your doctor about what contraceptive options are available for protection and are safe for you to use, given your latex allergy.
Men and women with spina bifida can be parents. Men may need medical assistance to obtain sperm. Pregnancy for women with spina bifida requires some adjustment of catheterizing times and monitoring for pressure sores and shunt function. You should discuss issues regarding medication usage during pregnancy with your doctors before becoming pregnant. See further information about RIC's Women With Disabilities Center.
Learn more about RIC's Sexual Dysfunction Clinic for Men with Spinal Cord Injury.