OHSU Doernbecher cares for every aspect of spina bifida, from prenatal diagnosis to managing the condition into adulthood. Our specialists also offer comprehensive, state-of-the-art treatment for related conditions.
- Our Fetal Care Program offers advanced imaging and treatment for spina bifida diagnosed during pregnancy.
- Our Multidisciplinary Pediatric Spine, Scoliosis and Deformity Clinic provides expert, team-based surgical and orthopaedic care.
- Our Spina Bifida Program offers Oregon’s only comprehensive care and management for spina bifida patients of all ages.
Understanding spina bifida
Spina bifida is a birth defect that occurs when the spine doesn’t close properly during the first month of pregnancy. It’s also called a “neural tube defect” because it involves the hollow structure that develops into the brain, spinal cord and their coverings (membranes called meninges).
In spina bifida, the most common neural tube defect, the spinal canal (the area around the spinal cord) doesn’t fully close. In severe cases, part of the spinal cord protrudes from the opening left in the spine, damaging the spinal cord and nerves.
The mildest form occurs when one or more vertebrae (spinal bones) are malformed. It rarely causes symptoms and may never be detected.
In this type, a sac with spinal fluid and meninges protrudes from the spinal opening, sometimes causing disabilities.
In the most severe type, a fluid-filled sac with meninges and part of the spinal cord and nerves protrudes from the spinal opening. This can cause moderate to severe disabilities, such as full or partial paralysis below the spinal opening, and bladder and bowel dysfunction.
In this rare defect, a fatty mass under the skin is connected to the end of the spinal cord. This can pull on the spinal cord as the child grows, causing neurologic problems.
Research has shown that a lack of folic acid (a B vitamin) during pregnancy can result in neural tube defects, including spina bifida. Genetics also may play a role. Overall, though, the cause of spina bifida remains unknown.
Symptoms and complications
Symptoms and complications vary widely, depending on where in the spine the abnormality occurs and how severe it is. They can include:
- Paralysis and nerve damage below the spinal opening
- Lack of bladder and bowel control
- Learning disabilities
In older children, latex allergies, skin problems, gastrointestinal problems and depression
Some mild cases go undiagnosed. Most other cases are diagnosed before birth. Tests of the mother’s blood during pregnancy can reveal a high level of a certain protein, leading to an ultrasound that can enable doctors to see a spinal opening. Amniocentesis, or analysis of amniotic fluid withdrawn by needle, can also confirm the presence of spina bifida.
After birth, a dimple, tuft of hair, birthmark or fat mass may indicate the site of a mild spinal malformation. A protrusion such as a meningocele or myelomeningocele is clearly visible.
Damage to the spinal cord or nerves from spina bifida cannot be reversed, but treatment can prevent further damage and help patients gain mobility and other functions. Our goal is to ensure that patients reach their full potential.
- Fetal care: Our Fetal Care Program — the only one of its kind between Seattle and San Francisco — offers team-based diagnosis and care for a wide range of birth defects, including spina bifida. A nurse coordinator helps arrange appointments. Services include everything from genetic testing to advanced imaging.
- Surgical care: If surgery is required to repair a spinal opening, our world-class pediatric neurosurgeons offer expertise in complex cases and in the latest techniques and technology.
- Continuing care: Our Multidisciplinary Pediatric Spine, Scoliosis and Deformity Clinic provides expert care for spine conditions that may arise as the child grows older. In addition, Doernbecher's Spina Bifida Program offers Oregon's only comprehensive ongoing care for infants, children, teens and adults with spina bifida. The program brings together experts in neurology, child development, physical therapy and pediatric urology. They consult our specialists in special education, psychology, audiology and speech therapy.
Chiari malformation, in which part of the lower brain extends into an opening in the base of the skull, can accompany spina bifida. If surgery is required, Doernbecher’s pediatric neurosurgeons are experts in a less-invasive technique that offers equally good results.
Doernbecher offers world-class treatment for hydrocephalus, a condition in which fluid and pressure build up in the brain, sometimes as a result of spina bifida. We’re among the top tier of children’s hospitals with a state-of-the-art surgery that frees some patients from needing a shunt.
Some spina bifida patients have tethered cord, a condition in which the spinal cord is abnormally attached to tissue inside the spinal canal. If surgery is needed, our pediatric neurosurgeons include a national expert on tethered cord. His research has shown that a less-invasive technique offers excellent outcomes.
Doernbecher's Multidisciplinary Pediatric Spine, Scoliosis and Deformity Clinic is one of the nation's few with experts in neurosurgery and orthopaedics working together to treat children with neurodegenerative scoliosis related to spina bifida.
- Spina Bifida Information Page and Spina Bifida Fact Sheet, National Institute of Neurological Disorders and Stroke
- Spina Bifida, Centers for Disease Control and Prevention, with fact sheets and other materials for parents
- Spina Bifida Association, an advocacy group that offers information and support
Call 503-346-0640 to:
- Request an appointment.
- Seek a second opinion.
- Ask questions.
Parking is free for patients and their visitors.
Doernbecher Children’s Hospital
700 S.W. Campus Drive
Portland, OR 97239
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