Spina Bifida

Scope of Care

Because Spina Bifida and Neural Tube Defects (NTDs) are relatively rare, even specialist physicians are not familiar with the associated acute and chronic medical conditions to be diagnosed and treated in children and adults living with these conditions. Even care at a teaching hospital is not sufficient: comprehensive, coordinated interdisciplinary services are imperative. We not only follow the Guidelines for Spina Bifida Health Care Services Throughout the Lifespan, we literally wrote and edited them for Spina Bifida Association (SBA, 2006). The overall goals of the Program are attaining and maintaining optimal health status, preventing secondary disability, maximizing potential to participate in society, and fostering transition to independence.

Services We Provide

The Spina Bifida Program is the state-wide Title V (SCSHCN) and regional specialized clinic for persons living with spina bifida throughout the life span. We serve more than 350 children and adults with on-going care. Our interdisciplinary team approach assures close communication and coordinated care across the disciplines.

Referral from the Obstetrician or Perinatologist for Prenatal counseling is exceedingly helpful. Children are followed in the clinic three to four times in the first year of life, biannually through age three, then annually thereafter.

Service Providers

The Team consists of the Core group of CDRC-based providers as well as Doernbecher based subspecialist surgeons. The Core Team is made up of a Developmental Pediatrician, Pediatric Nurse Practitioner, Register Nurse, Medical Social Worker, and Physical Therapist as well as Pediatric Nurse Practitioners from Neurosurgery and Urology. Other CDRC base4d specialists available for consultation are Occupational Therapy, Special Education, Psychology, Audiology, and Speech Therapy. They address family, community, behavior, education and development issues. The team of subspecialist consultants includes Pediatric Neurosurgery, Pediatric Urology, and Pediatric Orthopedics.

How to make a Referral

Your primary care physician may initiate referral to the Spina Bifida Program. As a team, we are strongly committed to the medical home and the involvement of your family doctor or pediatrician in the care of your child. You, the parent or the persons experiencing spina bifida, may request a consultation or full team comprehensive evaluation. For more information, or to initiate a referral, please call 503-494-8095 or 800-452-3563.

Resources

• Folic Acid: Prevent Spina Bifida
• Acido Folico: Impida La Espina Bifida
• Latex Allergy Information
• Care of the Child with Neural Tube Defect
• Next Steps: The Oregon Spina Bifida Project Final Report
• Women Need to Know About Folic Acid: It is Important to Your Future Child
• A Scientific Explanation of Folic Acid Prevention

The following links are provided as a service but do not indicate endorsement:

• Spina Bifida Association of America (external link)
• Children With Spina Bifida Web Site (external link)

Research

The Program Director served a five-year term on the Professional Advisory Committee of the Spina Bifida Association (SBAA). In that capacity, he participated in a national invitational conference entitled "Evidence Based Practice in Spina Bifida: Developing a Research Agenda," where he presented two papers. He is also a member of the Society for Research in Hydrocephalus and Spina Bifida, an organization with world-wide membership.

Research findings on Quality of Life experienced by our adult patients living with Spina Bifida was presented at an international conference in Cambridge, England in 2006. We are currently part of a three-center research project attempting to describe Quality of Life experience regarding bowel and bladder continence in children living with spina bifida.