SPINA BIFIDA TEXAS

SBTX is actively involved in prevention of SB through our Folic Acid Awareness initiatives. This birth defect that develops in first 28 days of pregnancy results in a malformation of the spine and spinal cord. The early onset oftentimes affects the development of other major systems in the body. Babies born with SB face complications that include; paralysis, orthopedic challenges, hydrocephalus, learning disabilities, as well as bowel and bladder incontinence issues. SB occurs in 6.3 of every 10,000 births in Texas, almost twice the national average. This higher incidence is attributed to the higher concentration of Hispanic women in our area, who are twice as likely to be affected. The CDC (Centers for Disease Control & Prevention) as well as the NIH (National Institutes of Health) have recommended that all women of childbearing age should be consuming 400mcg of folic acid every day. This healthy choice can reduce their risk of having a pregnancy affected by SB by up to 70%. In the United States 50% of all pregnancies are unplanned and since SB happens early, before most women know that they are pregnant, it is extremely important to educate all women whether they are planning a pregnancy or not. Our outreach efforts include participation at area bridal and health fairs where we administer folic acid quizzes, conduct surveys and distribute multivitamins that contain folic acid as well as bags and mirrors with our folic acid message. SBTX also provides over 250 gift bags to brides in San Antonio during the annual mass wedding ceremonies on Valentine’s Day. Finally, our outreach efforts also include presentations to high schools, WIC clinics and women’s groups regarding the importance of folic acid in a woman’s daily regimen.

Just as important as prevention are our efforts to improve the daily lives of those affected by Spina Bifida and other physical disabilities. Our most innovative program is FashionABLE is in its seven year of existence FashionABLE continues to be embraced by the community. FashionABLE pairs design student with children with physical disabilities. The designers are tasked with creating a garment that is modified to help the child in their daily lives. The program benefits both the models, who receive a customized outfit and a boost in self-esteem, and the student designers, who learn more about disabilities and improve their skills while helping others. What started out with one class of 16 students participating from Jefferson High School has grown to include 4 high schools, 80 designer/model pairings and over 400 attendees at this year’s FashionABLE show, where the design students were eligible for scholarships and prizes for their designs
Because the diagnosis of Spina Bifida can be overwhelming for new families, our New Parent Mentoring is extremely important. Our “New Parent Packet” contains information on medical issues associated with this complex disability as well as with information on community resources and funding for the families. Volunteer veteran parents meet with the family and give them the much needed encouragement and support during this trying time. Parents are also encouraged to participate in our English and Spanish Speaking support groups, which promote the sharing of information, community resources, and independent living. We also encourage them to visit our resource library. SBTX continually updates and stocks this library with information on the many issues associated with Spina Bifida. These books and publications are available at the SBTX office for families who wish to learn more about this complex disability. The SBTX Lending Closet is another resource we provide for families . The lending closet consists of donated medical supplies and equipment available for families in an emergency situation.
We also have a quality of life enhancement program that includes sponsorship opportunities to attend camp and participate in sports and arts programs for individuals with Spina Bifida. SBTX provides young adults with scholarships so that they can pursue higher education opportunities at either an accredited college or trade school.
Our educational outreach includes our annual Spina Bifida Conference and our folic acid awareness program. The full-day conference contains valuable information on all aspects of this complex disability. Doctors, medical professionals, as well as educational specialists share their vast knowledge with the families. Medical topics covered include neurological, orthopedic, and urology. Also covered are independence issues, learning disabilities, and physical fitness opportunities in the community. SBTX also provides independence training through the “On the Right Tract” program provides parents and professionals with tools that include step by step instructions to help teach children about personal hygiene and self-catheterization skills, an area of independence training that is always hard to accomplish within the Spina Bifida community. Also provided are anatomically correct male and female models that children can use as visuals and to practice inserting catheters correctly.