Living with Isolated spina bifida
A group of birth defects in which the spine does not close fully during development, ranging from no symptoms to major effects on movement and sensation.
Understanding Isolated spina bifida
It occurs without other major birth differences. The size and type of the opening vary. In spina bifida occulta the spot is not exposed and may cause no symptoms. In other types, the spinal cord or its coverings can push out, sometimes in a sac. Depending on the type, size, and site, people can have movement, sensation, and bladder or bowel problems. It is seen in newborns and infants.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these possible features:
- Opening in the spinal column
- Spinal cord or coverings pushing out (myelomeningocele, meningocele)
- Movement problems
- Loss of sensation
- Bladder and bowel control problems
- No symptoms in spina bifida occulta
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Spina Bifida Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Spina Bifida Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Spina Bifida Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It results from the spinal column not closing properly early in development.
Also known as: cleft spine; isolated spina bifida (disease); nonsyndromic spina bifida (disease); open spine; rachischisis
Patient organizations
- Spina Bifida AssociationIsolated spina bifida · United States
- Spina Bifida Resource NetworkIsolated spina bifida · United States
You are more than your diagnosis
Perspectives from people navigating life with Isolated spina bifida.
Explore research for Isolated spina bifida
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