What is

Hydrocephalus is a common complication associated with spina bifida, particularly in individuals with the more severe form known as myelomeningocele. In spina bifida, the neural tube fails to close properly during embryonic development, leading to an opening in the spine. This opening allows the spinal cord and its surrounding structures to protrude through the back.

The majority of individuals with myelomeningocele also experience hydrocephalus. Here is how hydrocephalus is related to spina bifida:

1. Cerebrospinal Fluid (CSF) and Hydrocephalus

Cerebrospinal fluid (CSF) is produced within the brain and normally circulates around the brain and spinal cord, providing cushioning and support. In individuals with myelomeningocele, the abnormal development of the spinal cord can disrupt the normal flow of CSF.

2. Blockage or Impaired Absorption

The protrusion of the spinal cord through the opening in the spine can cause blockages or impair the absorption of cerebrospinal fluid. This disruption can lead to an accumulation of CSF in the brain’s ventricles, resulting in hydrocephalus.

3. Increased Intracranial Pressure

Hydrocephalus in individuals with spina bifida can lead to an increase in intracranial pressure (pressure within the skull), potentially causing compression and damage to brain tissues.

4. Shunt Placement

The most common treatment for hydrocephalus in individuals with spina bifida involves the surgical placement of a shunt. A shunt is a flexible tube that diverts excess cerebrospinal fluid from the brain to another part of the body, typically the abdominal cavity, where it can be absorbed.

5. Monitoring and Management

Individuals with spina bifida and hydrocephalus often require long-term monitoring and management. The functioning of the shunt needs to be regularly assessed, and adjustments or revisions may be necessary over time.


Common symptoms of hydrocephalus in individuals with spina bifida may include:

1. Enlargement of the head (macrocephaly)
2. Bulging fontanelle (soft spot on the baby’s head)
3. Irritability
4. Poor feeding
5. Vomiting
6. Changes in eyesight (blurred or double vision)
7. Behavioral changes
8. Difficulty with balance and coordination

Early diagnosis and prompt intervention are crucial in managing hydrocephalus associated with spina bifida to prevent complications and optimize the individual’s overall health and well-being. Regular follow-up with healthcare providers and neurosurgeons is essential to monitor the condition and ensure timely adjustments to treatment if needed.

Living with
Spina Bifida & Hydrocephalus

Despite the challenges associated with spina bifida and hydrocephalus, individuals with these conditions can lead fulfilling and positive lives. Here are some positive aspects and strengths often seen in individuals living with spina bifida and hydrocephalus:

1. Resilience and Adaptability

Many individuals with spina bifida and hydrocephalus demonstrate remarkable resilience and adaptability in facing life’s challenges. They develop effective coping strategies and overcome obstacles with determination.

2. Unique Perspectives

Having a different set of experiences can provide individuals with spina bifida and hydrocephalus with unique perspectives on life, fostering creativity, empathy, and a broader understanding of diversity.

3. Supportive Communities

Many individuals with spina bifida and hydrocephalus benefit from supportive communities, including family, friends, and peer groups. These connections offer emotional support and opportunities for shared experiences.

4. Personal Strengths and Achievements

Individuals with spina bifida and hydrocephalus often develop specific strengths, such as problem-solving skills, resilience, and determination. Many achieve personal and professional successes.

5. Advocacy and Awareness

Some individuals become advocates for themselves and others, raising awareness about spina bifida and hydrocephalus. Their efforts contribute to increased understanding, reduced stigma, and improved access to resources.

6. Independence

With advancements in assistive technology and accessibility measures, many individuals with spina bifida and hydrocephalus can achieve a high level of independence in daily activities, education, and work.

7. Strong Support Systems

Having a strong support system, including healthcare professionals, family, and friends, can significantly contribute to positive outcomes and well-being.

8. Educational and Professional Success

Many individuals with spina bifida and hydrocephalus pursue education and professional careers, achieving success in various fields. Inclusive environments and accommodations contribute to their accomplishments.

9. Personal Growth and Development

Living with spina bifida and hydrocephalus often involves continuous personal growth and development. Overcoming challenges fosters resilience, self-advocacy, and a sense of accomplishment.

10. Engagement in Hobbies and Activities

Individuals with spina bifida and hydrocephalus often engage in hobbies, sports, and recreational activities, finding joy and fulfillment in pursuing their passions.

11. Positive Contributions to Society

Many individuals with spina bifida and hydrocephalus make positive contributions to their communities and society at large. Their experiences and perspectives can inspire others and promote inclusivity.

It’s important to recognize and celebrate the strengths and positive aspects of individuals living with spina bifida and hydrocephalus. While acknowledging the challenges, focusing on these positive elements contributes to a more inclusive and supportive understanding of their experiences.