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.

Our program’s goal is to facilitate independence. We have an Independent Skills Clinic in which your child can be fitted for mobility devices and can also work on skills specifically related to bladder and bowel continence. This clinic utilizes the expertise of nurses and occupational and physical therapists to develop most effective programs. This clinic is held in the afternoon of each Friday clinic.

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

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)