Brain & Spine Center
Spina Bifida Program at Intermountain Children's Health
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, PM&R (physical medicine and rehab), and urology will work together in clinic to provide a personalized treatment plan for your child.
The Spina Bifida Clinic at Primary Children’s Hospital, Salt Lake City, Utah was started in 1954. The program, in addition to the clinic, provides prenatal counseling for families, inpatient consultation and education, clinical education for the hospital’s residency and fellowship program, vocational, education, and recreational programs throughout the lifespan.
Patient & Family Resources
- Spina bifida
- Nutrition
- Skin Care
- Hydrocephalus
- Chiari Malformation
- Bladder control
- Bladder catheterization
- Bowel Management
National Resources
Additional Resources
- Bowel management resources
- Facebook support groups
- Common Medication help sheets
- Primary Children's Spina Bifida Road Map
- Recreational resources
- Neuropsychiatric testing resources:
- State websites
What to Expect
Our clinic meets three Fridays a month from 8am – 12pm. 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 2-3 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. With each annual visit, your child will have a 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 and bowel programs or to meet with providers for mobility devices such as wheelchairs.
Infants and children are usually seen in the first two clinics of the month, and adolescent and young adult are seen the fourth Friday of the month. Each child will get their own room and the providers and members of the multidisciplinary team will rotate through each patient. You will have an opportunity to sit with the MA at the beginning of the visit and review what members will see your child. At this time, you can request other providers that you feel your child needs to see.
What Sets Us Apart
Prenatal Program
The Spina Bifida Prenatal Program is coordinated with the Maternal Fetal Medicine Programs at Intermountain Medical Center and the University of Utah Medical Center. The program is offered to every woman diagnosed with a fetus affected with a neural tube defect. The pediatric nurse practitioner/coordinator of the Spina Bifida program and a pediatric neurosurgeon have developed the program and collaborate with MFM physicians throughout the intermountain area.
This program provides an opportunity for families to receive accurate and realistic information to make informed decision about care. Once the initial session is completed, families are offered further education opportunities provided by the nurse practitioner coordinator throughout the pregnancy. All families are provided the Family Notebook and contact information for the Utah Spina Bifida Support Group and the National Spina Bifida Association.
Independent Skills Clinic
Multidisciplinary Care
All our providers are pediatric specialists with years 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 dietitian 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 clinic for follow up throughout their life into adolescence.
Research and Evidence-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.
Here is a link with more information on the UMPIRE study that we are apart of - Urologic Protocol | CDC
Transition Program
Our transition program takes a holistic approach to promoting age-appropriate independence for individuals with spina bifida in adolescent age. This includes interventions based on developmental milestones that are designed to optimize development, scholastic achievement and building social relationships.
Our transition program has 4 key components:
- Medical
- Med peds
- Lamb and Watson
- Community integration
- OT/PT
- Vocation/education/emotional wellness
- Psych
- Funding/guardianship
- SW
Transition resources
- Adult primary care examples
- Mental health resources
- Heading to college helps and information
- Navigating the workplace
- Driving information
- Maturation and sexuality
- Vocational rehab VOCATIONAL REHABILITATION - Utah Parent Center
- Support programs (recreation, financial programs, guardianship)