The wait times in our emergency departments are longer than usual due to illnesses like RSV and the flu. View our estimated ED wait times and learn more about where to get care for your sick child.

Spina Bifida Program

Our spina bifida program provides care as unique as each patient

No two kids with spina bifida are exactly the same, so their health care needs aren’t either. The spina bifida program at Children’s Minnesota offers comprehensive, coordinated care that brings together the pediatric specialists and services to care for patients with spina bifida – from diagnosis up to age 21.

We know that each patient and family have different needs. That’s why we work together to:

Preserve or improve each patient’s ability to function in their daily life
Simplify the coordination and management of multiple medical issues
Link patients and families to the resources they need for the best outcomes possible
Provide developmentally appropriate support for our patients as they transition into adulthood

New patients

Online scheduling is now available for appointments.

What to expect at the spina bifida clinic

The spina bifida clinic is located at the Children’s Minnesota Specialty Center in Minneapolis. We care for patients throughout the upper Midwest and across the region. Our team of kid experts work together to create a plan for each patient. Every effort is made to coordinate appointments over a one- or two-day visit to Children’s Minnesota. Appointments may include medical imaging (radiology) services, appointments with medical and surgical specialists, talking and discussing neurodevelopmental screening tests, and seeing other clinician necessary to best take care of your child and your family.

More great things about our spina bifida program

We partner with Shriners Children’s to provide our patients with access to top orthopedic specialists. This collaboration has been formed to preserve and improve the function, strength and mobility of patients with spina bifida, all under one roof. A relationship like this makes it easier for patients and families to access the comprehensive team they deserve.

For ease of access, our clinicians can provide orthopedic and complex care telehealth appointments for patients in Greater Minnesota, North Dakota, South Dakota, Wisconsin, and Iowa.

Age-appropriate standardized testing is performed, tracked, and discussed with patients and family at each routine visit, including evaluation of developmental milestones, disability rating, and readiness to transition to adult services.

Our neurogenic bowel clinic is housed within the spina bifida clinic. Visits with a bowel and bladder occupational therapist are integrated within spina bifida visits. Our integrated rehabilitative bowel management services include education, preservation of bowel and kidney function, and increasing independence and social continence for our patients. We offer transanal irrigation system management for both Peristeen and Navina.

The spina bifida program hosts integrated mobility clinics that include a full evaluation by a gait physical therapist (PT), a physiatrist, a complex orthopedics specialist, and a complex care pediatrician.

Our complex care pediatrician goes to the NICU and ICC at the Minneapolis hospital location to perform consults and ongoing weekly visits for infants born with neural tube defects - those repaired both before and after birth.

Children’s Minnesota spinal bifida program & Midwest Fetal Care Center (MWFCC) collaboration

With a complex condition like spina bifida, you want the best medical team taking care of your child. We’re proud to have some of the top pediatric specialists in the nation in our spina bifida clinic, including those from MWFCC as part of our collaborate care model. This is our typical patient journey:

Prenatal visits at MWFCC – Expectant families who are seen for spina bifida at the MWFCC will have scheduled prenatal visits. During these visits, our spina bifida team is introduced to start building a relationship with the families whenever possible.
Delivery and transition to Children’s Minnesota’s spina bifida program – Care typically begins at delivery in the NICU, where our MWFCC team provide immediate and essential care for the newborn. After birth, care transitions to Children’s Minnesota’s spina bifida program, ensuring continuity and specialized care for your child as they grow.

For older children who have had their care from other spina bifida programs, care begins at the time of physician referral or parent request for care in our clinic.

We offer multi-disciplinary care and services

Our team is designed to meet the needs of each child, and includes surgical and non-surgical specialists, such as those from neurosurgery, orthopedics, physiatry, complex care pediatrics, gait physical therapy (PT), wound assessment, bowel and bladder occupational therapy (OT), and urology.

Our multidisciplinary program includes:

Spina Bifida and Neurosurgery
The neurosurgical team repairs spina bifida, continuing to manage and monitor neurologic health from diagnosis to age 21.
Spina Bifida , Neurosurgery and Bowel/Bladder Occupational Therapy
Occupational therapy works with parents and patients on developing a bowel plan and teaching self-catheterization skills.
Spina Bifida , Neurosurgery and Physical Medicine & Rehabilitation
Physiatrists (physical medicine and rehabilitation specialists) evaluate neuromuscular development and the need for orthotics/braces, therapies and other interventions to maximize function.
Spina Bifida , Neurosurgery and Orthopedic Surgery
Orthopedic surgeons correct issues with bones in the spine, hips, legs and feet through braces, casts, and surgery.

Our grouped (same or next day) appointments include:

Spina Bifida and Urology
Urologists specialize in managing bladder control, catheterization, and monitoring of ongoing bladder health.
Spina Bifida and Skin Integrity
Wound and ostomy specialists work with patients to speed healing of any pressure wounds, and to help prevent further wounds.
Spina Bifida and Orthotics
Orthotists fabricate braces (orthotics) and work with physical medicine and rehabilitation specialists and therapists to determine what the best orthotic might be to improve function and neuromuscular alignment.

Our expedited appointments (within a few weeks) include:

Spina Bifida and Neuropsychology
A neuropsychologist evaluates patients to determine if any assistance or support is needed for learning.

Spina bifida research

Our program monitors outcomes of patients who have had fetal repair of myelomeningocele as part of a national research study in collaboration with the MWFCC. The outcomes for fetal repair of spina bifida at the MWFCC are significantly improved compared to post-birth repair. Approximately 2/3rds of patients have improvement in motor function when born, compared to their pre-surgery assessments, and that approximately 2/3rds of patients do not require surgery for increased pressure within the brain within the first year of life.