OHSU

About Spina Bifida

The Spina Bifida Program at CDRC is the state-wide TitleV (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.

The team consists of the Core group of CDRC-based, nationally recognized providers as well as Doernbecher subspecialist surgeons.The core team is madeup of a Developmental Pediatrician/Child Neurologist, Pediatric Nurse Practitioner, Physical and Occupational Therapists as well as a Pediatric Nurse Practitioner from Pediatric Urology. Other CDRC specialists are available for consultation from several disciplines including Special Education, Psychology, Audiology, and SpeechTherapy. Together we address family, community, behavior, education and development issues.The team of subspecialist consultants includes Pediatric Neurosurgery, Pediatric Urology, and Pediatric Orthopedics. Our interdisciplinary team approach assures close communication and coordinated care across the disciplines.

Our specialized services include:

  • Developmental Pediatrics
  • Pediatric Urology
  • Pediatric Neurosurgery
  • Physical Therapy
  • Care coordination and life-long continuity
  • Coordination with the Primary Care Provider and other home community providers

 

Evaluation And Treatment

Our team of nationally recognized providers from the Child Development & Rehabilitation Center (CDRC) provides clinical care and treatment for children with the most challenging disabilities and special health care needs. Because Spina Bifida and Neural Tube Defects (NTDs) are relatively rare, even specialist physicians are often not familiar with the associated acute and chronic medical conditions to be diagnosed and treated in children and adults living with these conditions.Therefore,coordinated interdisciplinary services are imperative. We follow the Guidelines for Spina Bifida Health Care Services throughout the Lifespan. 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.

 

Research

Dr. Mark Merkens, the former long-time Program Director, served a five-year term on the Professional Advisory Committee of the Spina Bifida Association of America (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. Dr. Merkens remains closely involved with the Program as a mentor and advisor.

Dr. Joseph Pinter, the new Program Director as of 2012, plans to continue to work with both national and local groups to promote health, education and research in patients with Spina Bifida and their families.

Leadership