Overview of Spina Bifida Clinic
To make an appointment call the Spina Bifida Clinic secretary at (414) 266-2415.
Spina bifida is a common birth defect that occurs when the spinal column (back bone), which protects the spinal cord and nerves, fails to close properly during the first month of pregnancy. The baby is born with an open spine with varying amounts of nerve tissue exposed. The level of damage is different for each child.
There are several forms of spina bifida and some require more medical intervention than others. Myelomeningocele is the most severe and can include hydrocephalus (water on the brain) and Chiari II malformation, in which the lower parts of the brain move toward or into the upper cervical spinal canal.
Shortly after birth, the opening in the spine is closed surgically and a shunt tube is placed to drain fluid if hydrocephalus is present. After surgery, and while the staff makes sure the shunt is functioning properly, the baby's care is the same as normal newborn care.
About Us
The Spina Bifida Program was created to serve all types of spina bifida (except occulta) and related conditions. Our goal is to help children with spina bifida stay healthy, gain independence, and become confident in their abilities. Our team includes experienced, dedicated professionals who work together to provide and recommend care to benefit each child. The staff is committed to providing quality care and education to maximize each child's quality of life.
Clinical nurse specialist
Between scheduled clinic appointments, a clinical nurse specialist is available by calling (414) 266-2690. Appointments may be scheduled for specific treatments, such as clean intermittent catheterization, bowel programs, TES (therapeutic electrical stimulation) also known as TASC (technology-assisted self-care), urodynamic studies and biofeedback.
Her roles include that of teacher, case manager, advocate and consultant. She appreciates opportunities to educate the community on spina bifida and often works with schools and community agencies. The clinical nurse specialist also provides prenatal counseling for families who know their baby will be born with spina bifida.
Information available
To help families feel connected and up to date, a large communication board is displayed in clinic and features recent articles, activities and announcements about spina bifida. A Spina Bifida Resource Room is available on clinic days. It offers educational materials, a continence product display cart and toys for children while they wait.
Copies of Insights Into Spina Bifida, a publication by the national Spina Bifida Association, and SB Wins, a newsletter of the Spina Bifida Association of Wisconsin, also are available for families.
Spina Bifida Family Forums are offered periodically on a variety of topics including parent panels.
Community Connections
Spina Bifida Association - Our clinical nurse specialist has lead the Latex Allergy Committee and is presently working with a select of professionals on transitioning patients to adult spina bifida care.
Spina Bifida Association of Wisconsin - Children's Hospital Spina Bifida Program is a gold sponsor of the annual Sprint For Spina Bifida, co-sponsor of the Baby/Parent Connection Luncheons, and the clinical nurse specialist previously served as director for the GOAL Independence Project and Team Mentoring Programs. Team members serve on the board of directors.
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