Disability Awareness Hub: Understanding Spina Bifida and Hydrocephalus: Raising Awareness and Promoting Inclusion

October 4, 2025

Understanding Spina Bifida and Hydrocephalus

Spina bifida and hydrocephalus are two closely linked neurological conditions that affect thousands of individuals worldwide. While both are lifelong conditions, advances in medical care and community support have significantly improved outcomes and quality of life for those affected.

What is Spina Bifida?


Spina bifida is a neural tube defect that occurs during early pregnancy when the spinal cord and its surrounding structures fail to close properly. This can result in varying degrees of physical and neurological impairment depending on the severity and location of the defect. There are three main types:

  • Spina bifida occulta – the mildest form, often hidden under the skin.
  • Meningocele – involves a sac of fluid protruding through the spine.
  • Myelomeningocele – the most severe form, where spinal nerves are exposed, often leading to paralysis and other complications 

What is Hydrocephalus?


Hydrocephalus is a condition characterised by an accumulation of cerebrospinal fluid (CSF) in the brain, which can increase pressure and cause damage. It is commonly associated with spina bifida, especially in individuals with myelomeningocele. Hydrocephalus may be present at birth or develop later due to injury, infection, or other causes.

Treatment often involves the surgical placement of a shunt system to drain excess fluid from the brain to another part of the body, typically the abdomen. While effective, shunts require ongoing monitoring and may need revision over time.
 

Living with Spina Bifida and Hydrocephalus


Individuals with these conditions demonstrate remarkable resilience and adaptability. With access to assistive technology, inclusive education, and strong support systems, many lead fulfilling lives, pursue careers, and contribute meaningfully to their communities.
 

Personal stories, like that of Mary Dufton, highlight the importance of early medical intervention, family advocacy, and community support. Despite facing multiple surgeries and mobility challenges, Mary has embraced life fully, participating in adaptive sports and volunteering to raise awareness.
 

Why Awareness Matters


Raising awareness helps:

  • Promote early diagnosis and intervention.
  • Encourage inclusive practices in schools and workplaces.
  • Support families navigating complex medical and social systems.
  • Reduce stigma and foster empathy and understanding.

 


If you're concerned about someone you know or you would like to learn more, reach out to learn how we can help.


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At helpz, we love celebrating milestones that highlight resilience, growth, and the power of support. Today, we shine a spotlight on Kia, a young woman whose journey reminds us that with compassion and belief, incredible things are possible. Kia has faced more challenges than most her age. Growing up in foster care and overcoming significant hurdles in her early years has not stopped her. Kia has not let her life story define her spirit. Recently, she achieved a life-changing milestone: she proudly started her first job at McDonald’s . This isn’t just employment; it’s a symbol of her growing confidence, independence, and belief in herself. Working at McDonald’s is more than flipping burgers and serving fries. For Kia, it’s an opportunity to develop essential life and work skills; communication, teamwork, following routines, and managing new responsibilities. Each shift strengthens her sense of purpose and pride, proving that she’s capable of thriving in a structured, supportive environment. The McDonald’s team has played a vital role in Kia’s success. Their welcoming and inclusive approach ensures she feels supported as she learns at her own pace. Patient guidance from colleagues, combined with ongoing encouragement from her behaviour support practitioner, Marika Williams, has created a foundation where Kia can flourish. Equally deserving of recognition is Renee, Kia’s Living Skills Keyworker from Catholic Care . Renee has worked tirelessly alongside Kia, providing consistent, grounded support that has been instrumental in helping her reach this milestone. Her dedication, patience, and unwavering belief in Kia have made a profound impact, and we deeply appreciate the role she’s played in Kia’s journey. Starting a customer-facing role is no small feat for someone who has experienced social anxiety and depression. Every interaction, every smile exchanged, is a step toward conquering fears that once felt overwhelming. Kia is not just earning a pay cheque, she’s building confidence, practising social skills, and connecting with others in meaningful ways. Kia’s journey is a powerful reminder that with the right supports, compassion, and belief, people can achieve incredible things. She is discovering her strengths, embracing new challenges, and proving to herself, and to all of us, that she is capable of greatness. Congratulations, Kia! Your courage and determination inspire us all. Here’s to many more milestones and a future filled with possibilities.

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