The Spina Bifida Clinic at Primary Children's Hospital takes a multidisciplinary approach to the care of children with myelomeningocele, meningocele, lipomeningocele and other neural tube defects such as tethered cord. Specialists in pediatric neurosurgery, orthopedics, neurology and urology will work together in clinic to provide a personalized treatment plan for your child.
What Sets Us Apart
Our clinic was established in 1954 and all of our providers are pediatric specialist with decades of experience treating children with Spina Bifida. Our multidisciplinary team will follow your child's development closely with nurses, occupational and physical therapy, and a psychologist who can help maximize your child’s physical, social and cognitive development. Nutrition and weight management is especially important for children with spina bifida and a dietician is available in clinic as well to review your child’s growth.
Our providers begin care with prenatal counseling and then care for the newborn prior to surgery. Newborns are then referred to the the clinic for follow up throughout their life to adolescence.
Independent Skills Clinic
On Friday afternoons, we have Independent skills clinic in which your child can be fitted for mobility devices and can also work on skills for independence specifically related to bladder and bowel continence. This clinic utilizes the expertise of nurses and occupational and physical therapists to develop most effective programs.
Research and Evidenced-Based Care
We are a part of the Spina Bifida Registry project through the Centers of Disease Control (CDC) which is a group of specialists who are working to improve the lives of children living with Spina Bifida. A part of the registry is a urological project bringing nine centers together to follow a robust management schedule for newborns to 5 years of age, providing surveillance. This project aims to result in positive urological outcomes for Spina Bifida patients.
What to Expect
Our providers follow your child’s development closely with occupational therapist, physical therapist and psychologist who can help maximize your child’s physical, social and cognitive development. Nutrition and weight management is especially important for children with SB and a dietician is available in clinic as well to review your child’s growth.
Our clinic meets three Friday mornings a month. Your child will be seen by physicians, therapists, a nutritionist, nursing, and when needed, social work and psychology. You may not see each provider at every visit, but we are all available to help your child address issues associated with spina bifida.
Typically, you will be at the clinic for 1-2 hours to give you enough time to see all the providers who need to see your child that day. Though the visits can be long, it is important that you have time to meet with the providers and ask questions. At some visits, your child may have a brain MRI or bladder study that is scheduled before or during clinic. Appointments for Friday afternoons in the Independent Skills Clinic typically last about an hour to learn about bladder catheterization or to meet with providers for mobility devices such as wheelchairs.
Patient Education and Resources
Let's Talk About...