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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Paws for Thought: The Therapeutic Power of Pets

October 4, 2025

Across recent team discussions, Behaviour Support Practitioners have been diving into a heartwarming and increasingly relevant topic: the therapeutic benefits of pets, particularly for older participants. Whether it’s the wag of a tail, the purr of a cat, or the gentle nudge of a nose, animals are proving to be more than just companions—they’re powerful contributors to emotional wellbeing. For many older participants, pets offer a sense of purpose, routine, and unconditional love. They can help reduce feelings of loneliness and isolation, which are common among those living alone or experiencing limited social interaction. The simple act of caring for a pet—feeding, grooming, walking—can foster independence and boost self-esteem. Research and anecdotal evidence alike show that pets can: Lower stress and anxiety levels Improve mood and emotional regulation Encourage physical activity and mobility Provide sensory comfort and grounding Support social connection through community pet events or casual chats with fellow pet lovers One Behaviour Support Practitioner shared a story about a participant whose mood and engagement dramatically improved after adopting a rescue dog. The participant began taking daily walks, chatting with neighbours, and even attending local dog meetups—activities that had previously felt out of reach. Interestingly, the benefits aren’t limited to dogs and cats. Birds, rabbits, guinea pigs, and even fish have been shown to offer calming effects and companionship. For participants in supported accommodation or those with limited mobility, low-maintenance pets can still provide meaningful interaction and joy. Practitioners are now exploring ways to incorporate pet therapy into behaviour support plans, including: Facilitated visits with therapy animals Support to adopt or foster pets Collaboration with local animal shelters and pet programs Education around pet care and responsibilities Of course, every participant’s needs and circumstances are different, and careful planning is essential. But the growing interest in pet-based therapeutic strategies reflects a broader commitment to holistic, person-centred support. As one practitioner put it: “Sometimes the best kind of support has four legs and a wagging tail.” Check out our photos of all the pets among the helpz family.