Spina Bifida and Hydrocephalus: What Families Should Know
Understanding the Connection Between Spina Bifida and Hydrocephalus
Spina bifida and hydrocephalus are often closely connected. If your child has spina bifida, understanding how hydrocephalus may develop and what to watch for can help you feel more prepared and confident in managing their care.
Spina bifida is a condition in which the spine and spinal cord do not develop properly. It is part of a group of conditions called neural tube defects, which impact the brain, spine, or spinal cord.
There are several types of spina bifida:
- Myelomeningocele is the most common and severe form. A portion of the spinal cord and nerves develop outside the body in a fluid-filled sac.
- Meningocele occurs when a fluid-filled sac pushes through an opening in the spine, but the spinal cord and nerves remain in place.
- Spina bifida occulta is the mildest form. There is a small gap in the spine with no visible opening.
The effects of spina bifida vary depending on the type and the location of the spinal opening. Some individuals experience mobility challenges, bladder or bowel issues, or differences in learning and development.
It is estimated that about 80% of individuals with spina bifida also develop hydrocephalus.
How Hydrocephalus Develops in People with Spina Bifida
Hydrocephalus occurs when cerebrospinal fluid (CSF) builds up in the brain.
In people with spina bifida, this often happens because of differences in how the brain and spinal cord develop. Many individuals with spina bifida also have a Chiari II malformation. This means part of the brain sits lower than usual, which can block the normal flow of CSF.
Spina bifida is often diagnosed before birth through prenatal imaging. Hydrocephalus is commonly present at birth or identified soon after. In some cases, it may develop or change later in life, which is why ongoing monitoring is important.
Signs and Symptoms of Hydrocephalus
Hydrocephalus can look different depending on age. Knowing what to watch for can help you recognize symptoms early and seek care quickly.
In Infants:
- Rapid head growth
- Bulging or tense soft spot
- Vomiting
- Fussiness
- Sleepiness
In Children and Teens:
- Headaches
- Nausea or vomiting
- Vision changes such as blurred or double vision
- Trouble with balance or coordination
- Changes in attention, behavior, or school performance
In Adults:
- Persistent or worsening headaches
- Fatigue
- Changes in memory or thinking
- Balance difficulties
- Changes from their usual baseline
Symptoms can vary from person to person. For individuals with spina bifida, changes may be subtle. If symptoms are new, worsening, or different from what is typical, contact your healthcare provider.
To learn more, read about Hydrocephalus in Pregnancy and Hydrocephalus in Infants and Children.
Treatment Options for Hydrocephalus
Treatment for hydrocephalus focuses on relieving pressure in the brain by diverting excess CSF. This includes:
- Shunt Systems are the most common treatment. It is a medical device that drains excess fluid from the brain to another part of the body, such as the abdomen.
- Endoscopic Third Ventriculostomy (ETV): A procedure to create a passageway to restore CSF flow. In some cases, this may be an option. This procedure is not appropriate for everyone with spina bifida.
The choice of treatment depends on the person’s anatomy, age, and medical history. A neurosurgeon will determine the most appropriate approach.
Signs of a Shunt Complication
It is important to know the signs of a possible shunt malfunction or infection.
Watch for:
- Headaches
- Nausea or vomiting
- Changes in behavior or alertness
- Vision problems
- Balance or coordination issues
If symptoms are new, worsening, or different from usual, contact your neurosurgeon or healthcare provider right away.
To learn more, read about Complications of a Shunt System and Shunt Malfunction FAQs.
Ongoing Monitoring and Care
Hydrocephalus is a lifelong condition. Symptoms can change over time. Regular follow-up care helps:
- Monitor treatment effectiveness
- Identify changes early
- Adjust care as needed
Tracking symptoms over time can be helpful. Tools like HA’s mobile app, HydroAssist®, allow you to track symptoms and share information with your care team.
Building a Care Team for People with Spina Bifida and Hydrocephalus
Care often involves a team of specialists, which may include;
- Neurosurgeon
- Neurologist
- Urologist
- Orthopedist
- Primary care provider
- Physical and occupational therapists
Managing care across multiple providers can sometimes feel overwhelming for families. Appointments may be spread across different locations, and communication between specialists is not always seamless.
Spina bifida clinics can help simplify this process. These specialized clinics bring multiple providers together in one setting, allowing individuals to see several specialists during a single visit. This team-based approach can improve communication between providers, reduce the number of separate appointments, and make it easier to coordinate care.
Daily Life, School, and Development in People with Spina Bifida and Hydrocephalus
Children with spina bifida and hydrocephalus may experience differences in how they learn, move, and interact.
Some areas that may be affected include:
- Attention and focus
- Organization and planning
- Processing speed
- Motor skills and coordination
Support may include:
- School accommodations, such as IEP or 504 plans
- Physical or occupational therapy
- Extra time and structure for tasks
Every child is different. Many children grow and thrive with the right support.
Learn more about school resources and download our Teachers’ Guides to share with your child’s teachers. These guides highlight common learning challenges for children with hydrocephalus and offer practical support for success in mainstream classrooms.
Transitioning to Adult Care for People with Spina Bifida and Hydrocephalus
As children grow, preparing for adult healthcare is an important step.
This may include:
- Learning about their condition and treatment
- Understanding symptoms to watch for
- Building independence in managing care
- Connecting with adult providers
Starting early can make the transition smoother.
Learn more about transitioning to adult health care, view our Timeline for a Successful Transition to Adult Care, and download our Toolkit for Transitioning Medical Care.
Living with Spina Bifida and Hydrocephalus
Living with these conditions looks different for everyone. Some individuals may require therapy or assistive devices to support daily life, while others may need very little support. Many people live active, independent lives, pursuing education, careers, hobbies, and relationships.
Access to coordinated care, early intervention, and community resources can help individuals manage challenges and achieve their goals. Support networks, including healthcare teams and peer communities, play an important role in navigating both the medical and daily aspects of life with spina bifida and hydrocephalus.
Getting Support and Resources
Families and individuals navigating spina bifida and hydrocephalus do not have to face these conditions alone. Reliable information, medical care, therapy, and community support can make a meaningful difference.
Connecting with specialists, advocacy organizations, and peer networks can help people make informed decisions, manage challenges, and lead fulfilling lives.
For additional information and resources on spina bifida, visit the Spina Bifida Association.
Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2026. We would like to thank Susanne D. Kirkpatrick, MSN, FNP-BC, for her valuable contribution and expert input.