Our Spina Bifida Program supports babies, children and teens with spina bifida. We can evaluate what care your child needs, provide therapy and other services and connect you with specialists.
Our team is part of OHSU's Child Development and Rehabilitation Center. We provide:
- Care for more than 470 children with spina bifida.
- Access to a team of doctors, therapists and nurses from a range of specialties.
- Coordination with your child’s main doctor and other providers your child may see near your home.
- Parent-to-parent support.
- Help getting your child to their peak health and keeping them there.
- Help moving into adulthood and independent living.
- Clinics in Portland and Eugene, so you can choose the location that is closest to home.
How we stand out
As a Spina Bifida Association Clinic Care Partner, we give top care to all our patients. We work to meet the association’s high standards. We meet or exceed its Guidelines for the Care of People with Spina Bifida. We are among 38 U.S. clinic care partners.
We are also among 21 U.S. clinics taking part in the National Spina Bifida Patient Registry. The registry collects data to improve care and treatment for people with spina bifida.
Our spina bifida care
Most of the time, you will learn that your baby has spina bifida before you give birth. Specialists in our Fetal Care Program can:
- Confirm a diagnosis.
- Talk to you about what will happen next.
- Provide treatments and services.
If your child is diagnosed with spina bifida after birth, we can help make sure your child’s whole care team is in sync.
We start with an evaluation to understand the care your child needs right away. We also learn what care they may need as they grow.
Specialists who help with evaluation include:
- Fetal specialists
- Kidney specialists
- Doctors who specialize in the digestive system (gastroenterologists)
During and after your baby’s evaluation, our CDRC nurse practitioner will:
- Work with you on a care plan for your child.
- Connect your family with the specialists and services that will help your child most.
- Be your family’s main contact when you have questions or concerns.
- Help you coordinate care with your child’s doctor and other providers in your community.
Learn about spina bifida treatment at Doernbecher.
During your child’s first year, we see them once every three months. From ages 1 to 3, we see them every six months. After age 3, many children see us once a year.
Our services to help manage spina bifida include:
Behavioral health: Counseling, social support, help finding resources.
Educational support: Help working with schools and teachers.
Medication management: Help making sure your child has no problems with medication.
Nutritional support: Help for children with Chiari malformation, a complication of spina bifida. These children can have choking and other feeding issues.
Occupational therapy: Help with daily tasks, like taking showers or using household items.
Physical therapy: Helping children learn to move in safe and healthy ways.
Eye care: Spina bifida can lead to trouble with vision. Patients need regular eye exams.
Speech-language therapy: Speech and language delays are common in children with spina bifida.
Toileting support: Many children with spina bifida have trouble peeing and pooping. We can help them gain more control.
Our providers are doctors, nurses and therapists with expertise in:
Our program cares for children only. When our patients are ready for adult care, we can connect them to a new team of specialists and providers. We aim to make this transition as smooth as possible.
Call 503-346-0640 to:
- Schedule a visit
- Seek a second opinion
- Ask questions
Doernbecher Children's Hospital, seventh floor
700 S.W. Campus Drive
Portland, OR 97239
Eugene Child Development and Rehabilitation Center
74B Centennial Loop, Suite 100
Eugene, OR 97401
Free parking for patients and visitors
Since Balian met Jess Calvert, a Child Life Specialist at OHSU Doernbecher Children’s Hospital, his experience with spina bifida care has changed for the better, his parents say.