Spina Bifida Program

The Spina Bifida Program at Children's Wisconsin was created to serve pediatric patients with all levels of spina bifida and related conditions. Our goal is to help children with spina bifida stay healthy, gain independence and become confident in their abilities.

We rely upon the combined expertise and experience of pediatric neurosurgeons, orthopedic surgeons, urologists and rehabilitation doctors to treat spina bifida in children. We feel strongly — and experience has shown — that our interdisciplinary approach to spina bifida treatment provides the best possible chance for your child to successfully grow and to flourish. During clinic visits, each patient meets with a variety of specialists who address patient and family concerns, gather information, examine the child, review results and recommend a customized care plan that maximizes your child's quality of life.

To learn more about the causes, diagnosis and treatment of spina bifida, visit our page on Infant spina bifida.

Clinical Care Partner with the National Spina Bifida Association (SBA)

The Spina Bifida Program at Children's Wisconsin is designated as a clinical care partner in collaboration with the national Spina Bifida Association (SBA). This designation from SBA supports the excellent care that children with spina bifida receive at Children's. To be designated as a partner, the program must achieve 10 standards of care which use best practices to promote the best outcomes for people with Spina Bifida. The standards address such issues as:

• Ensuring the use of the guidelines for care of children with Spina Bifida
• Coordination of care through a multidisciplinary team
• A partnership with a prenatal evaluation center
• A transition program to continue to support the health of adults with Spina Bifida.

Children's Wisconsin joins only 30 clinics worldwide who have this designation and are able to collaborate with other providers and SBA, and to share ideas with a national network of providers that have also been recognized as SBA clinic care partners.

Children's spina bifida specialists

• Our Advanced Practice Nurse and clinic coordinator serves as an educator, case manager, advocate and consultant for all of our families. She provides prenatal counseling for families who know their baby will be born with spina bifida, and she assists with care management when patients are having a procedure or receiving care at the hospital. She also assists with coordinating appointments, triaging calls from parents, completing employment or insurance paperwork and referring patients to other specialties within Children's. Contact her at (414) 266-2690.
• Pediatric neurosurgeons perform the initial surgery and continue to monitor the spinal cord and brain.
• Pediatric urologists work to protect kidney function and specialize in the urinary tract and bowel function.
• Pediatric orthopedists specialize in problems of the bones, including the spinal column.
• Physical medicine and rehabilitation specialists address issues related to growth and development, wheelchair positioning, bracing and seating.
• Our social worker helps families cope and connect with community resources and government services.
• Our dietician works with nutritional issues and problems related to growth, weight and provides education and counseling on daily nutritional choices.

Clinic appointments for spina bifida treatment

The Spina Bifida Program sees patients in clinic on the second and third Tuesday of every month. For additional information or to make an appointment, call 414-266-2690. A reminder phone call, text message and letter may be sent to your home prior to your child's scheduled appointment. To stay up to date, you may also use your child's MyChart account for additional information related to appointments, medications and other updates. We are located on the second floor of the Craig Yabuki Tower.

Spina bifida education and prevention

Education plays an important role in disease prevention. Our team collaborates with partners in the community about spina bifida awareness and lifestyle factors that can help prevent neural tube disorders. We partner with schools and community agencies and offer prenatal counseling for families who know their baby will be born with spina bifida.

To keep our patients' families informed, we display a large communication board in our clinic to keep you up to date on the latest advances in spina bifida treatment and care, as well as activities and announcements for families living with the condition. A representative from the Spina Bifida Wisconsin association intermittently attends clinic to share state wide resources with families.