Spina bifida is a complex, disabling birth defect that affects approximately one out of every 1,000 newborns in the United States. This condition occurs when the spine fails to close properly during the first month of pregnancy. Most parents/families facing Spina Bifida are suddenly confronted with a birth defect they have never heard of or know very little about. With today’s medical technology, the majority of infants born with spina bifida will live into adulthood.
The Spina Bifida Program provides children and families with a variety of educational services as well as the care of numerous specialists. The program involves caring for those with spina bifida using a multidisciplinary team approach.
Because this birth defect is so complex, it involves numerous medical specialties that are represented on the team. The program is committed to providing quality, comprehensive, coordinated care for each individual and for his or her family. The spina bifida nurse coordinator works with primary care physicians, schools, Early Child Intervention services, the team and all other community resources to provide the services necessary to ensure the best healthcare outcome.
Program Staff and Services
Families are referred to the team through the nurse coordinator at (512) 324-0137. The team of specialists meet every second Tuesday of the month to see referrals. To better meet healthcare needs, labs, X-rays and other studies are also scheduled on these program days. The team members work together to best meet the needs of the child and family.
Other services available include:
- Prenatal visits with the neurosurgeon, the urologist and nurse coordinator
- Coordination of all surgical procedures
- Presurgical education
- Education on the effects and implications of spina bifida
- Hydrocephalus, tethered cord, bowel programs, bladder programs
- Latex allergy, skin problems, the role of folic acid
- Education on CIC (Clean Intermittent Catheterization)
- Information through the Spina Bifida Association of America
- Family support services
Team members include:
- Spine specialist
- Nurse coordinator
- Social worker
- Physical therapist
- Occupational therapist
- Enterostomal therapy nurse
- Wheelchair/equipment specialist
- Speech therapists
Resources through Referral:
Visits with the spina bifida team are conducted at the Specialty Care Center in Dell Children’s. Team specialists see children individually according to their specific needs. At the end of the day, the team members meet in conference to evaluate and plan the care for the children. The nurse coordinator then contacts the family to set up any further orders involving labs, X-rays or other studies that have been prescribed by the team specialists. Dictations including the details of the entire visit are mailed to all people participating in the care of the child; this includes the parents, the primary care physician, the schools, Early Child Intervention and all team physicians.