Spina Bifida is a congenital condition, meaning it develops during pregnancy and is present at birth. The term “spina bifida” literally means “split spine”, because the neural tube and spine do not form correctly during the first weeks of pregnancy.
The neural tube is the part of the embryo that develops into the brain and spinal cord. If this process is disrupted anywhere along the spine, it can lead to Spina Bifida.
Hydrocephalus is one of the most commonly associated conditions with myelomeningocele, as is a condition called Chiari II malformation, or hindbrain herniation.
Hydrocephalus is also called “water on the brain”. This “water” is actually cerebral spinal fluid (CSF), which is produced by the brain, and surrounds it, for instance, to protect it against trauma. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed into the bloodstream. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.
Currently, the only treatment option for hydrocephalus remains brain surgery, either to place a medical device called a shunt, or if possible, to perform a technique called Endoscopic Third Ventriculostomy (ETV), which can be combined with Choroid Plexus Cauterisation (ETV/CPC).
The exact causes are not fully understood. Genetics, environmental factors, and nutritional deficiencies (like folic acid) can contribute. Folic acid supplementation before and during early pregnancy reduces the risk of neural tube defects.
Spina Bifida can often be detected before birth through prenatal ultrasound and specific blood tests. In some cases, fetal surgery may be an option to treat the condition before birth, depending on medical advice and individual circumstances.
Types of Spina Bifida include:
1. Spina Bifida Occulta (Hidden/Closed)
2. Meningocele
3. Myelomeningocele (Open/Spina Bifida Aperta)
Spina Bifida is not directly inherited, but there may be a higher risk if there is a family history of neural tube defects (NTDs). NTDs can run in families, and depending on multiple factors, the chance of passing it on to a future generation can range from about 1% to 10%.
The impact varies widely. Some people may walk independently, while others may use mobility aids. Bladder, bowel, and sometimes cognitive functions may require support. With proper care and inclusion, most people with SBH can lead fulfilling lives.
Persons affected by Spina Bifida and/or Hydrocephalus benefit from multidisciplinary care. This includes support for associated conditions such as hydrocephalus, mobility challenges, incontinence, educational needs, and mental health. Coordinated care from medical, therapy, and support services helps ensure the best possible quality of life.
Persons affected by Spina Bifida and/or Hydrocephalus have the right to participate fully in education, work, sports, and community life. With appropriate support and reasonable accommodations, many pursue higher education, employment, and take part in adapted or inclusive sports and recreational activities.
Support can take many forms. It includes listening to and understanding individual needs, respecting independence and choices, promoting inclusion, and helping connect people with appropriate medical care, therapies, and local Spina Bifida and/or Hydrocephalus associations.
The International Federation for Spina Bifida and Hydrocephalus (IF) is the global representative organisation for persons with Spina Bifida and Hydrocephalus (SBH). We bring together people with SBH, the families, national SBH associations, and other key stakeholders from around the world. We work to promote the rights, inclusion, and well-being of persons with SBH through advocacy, awareness-raising, knowledge sharing, and member support, guided by the principle “Nothing about us, without us”.
While we do not provide direct financial assistance to individuals or families, we can help by connecting you with our member organisations in your region. These organisations may be able to guide you toward local resources, services, and support options.
Our membership includes over 100 Spina Bifida and Hydrocephalus (SBH) associations in Africa, Australia, the Americas, Asia and Europe. Members include family-led associations, hospital- or clinic-based organizations, and informal support networks, all working to support persons with SBH and their families.
Membership of IF is open to all nationally registered SBH associations that share IF’s vision and mission and actively involve people with SBH in their work. Organisations, institutions, companies and individuals with an interest in SBH and the aim to widen the extent of their activities are also welcome to apply for IF membership. To learn more, check out the IF Membership Guide in our Members’ page.
Check members’ testimonies in the IF Membership Guide on the Members’ page.
There are many ways in which you can get involved and support our work. Your support helps the International Federation for Spina Bifida and Hydrocephalus to advocate for the rights of persons with SBH and their families worldwide.
