Spina bifida management and support strategies.

Here at Leap in! HQ we love to hear feedback from our Members and audience, including tips and information on how we can improve our content. 

We recently shared a story about spina bifida and received some valuable feedback from one of our Members Lisa. 

Lisa let us know that there was some additional information that could have been added to the story which explained the key differences between spina bifida and hydrocephalus and that information about mobility issues, continence and ageing would also be really helpful.

We really appreciate the feedback and have updated the story below – thanks Lisa! 

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Around 5,000 Australians live with spina bifida and 150 babies are born with the condition here each year.

Spina bifida affects the development of the spine, spinal cord and brain. About 90% of people with spina bifida also have hydrocephalus which blocks the flow of cerebrospinal fluid through the brain.

It’s important to note that, as with many disabilities, the effects of spina bifida and hydrocephalus differ for each individual. Everyone’s experience of living with spina bifida and/or hydrocephalus is unique and therefore symptoms, treatment and the supports needed are different.

Today, we’re exploring some management and support strategies, including how the NDIS may be able to assist.  

Today, we’re exploring some management and support strategies, including how the NDIS may be able to assist.

About spina bifida.

Spina bifida is a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It is the most frequently occurring permanently disabling birth defect and can affect the spine, spinal cord and the brain.[1]

Spina bifida is complex, can affect all organs of the body and can be unstable, meaning any of the associated conditions can arise at any time.

The effects of spina bifida vary from person to person but can include:

• Paralysis of the lower limbs
• Curvature of the spine
• Epilepsy
• Skin ulceration
• Tethering or abnormal stretching of the spinal cord with can cause skin sores, scoliosis, loss of sensation and pain
• Impaired bladder and bowel function
• Loss of skin sensation and latex allergy
• High blood pressure
• Short stature.

For children, treatment focuses on determining the extent of symptoms and disabilities as they develop and preventing those that can be prevented.[2]

Symptoms can change as you age including loss of muscle strength and flexibility, decreased sensory abilities, changes in bowel patterns, sleep problems and orthopaedic issues such as osteoporosis.[3]

About hydrocephalus

Hydrocephalus is the result of a blockage in the flow of cerebrospinal fluid (CSF) through the pathways of the ventricles of the brain, causing pressure on the brain. It is usually treated by the insertion of a shunt that drains excess CSF from the brain to other parts of the body.[4]

Many people with hydrocephalus also have multiple surgeries as children and sometimes later in life.

The effects of hydrocephalus vary from person to person and can change over time. Symptoms include:

• Loss of bladder control or a frequent urge to urinate
• Memory loss
• Frequent headaches
• Emotional and behavioural issues
• Progressive loss of thinking or reasoning
• Poor coordination and balance, difficulty walking
• Sluggishness and lethargy.[5]

Tips for managing spina bifida and hydrocephalus.

People with lived experience of spina bifida and/or hydrocephalus share their strategies in a series of video interviews with Spina Bifida Hydrocephalus Queensland. We’ve included some of their tips below.

• Have a good health care team based on your individual needs such as a nurse, GP, ophthalmologist and allied health practitioners
• Ensure your medical and allied health team communicate with each other
• Surround yourself with family members and friends that can support you without expectation
• Access support workers where needed to help you get out in the community
• Get help with home maintenance if required
• Manage fatigue and physical tiredness
• Find what works for you and do that
• Keep active to support your mental and physical health.

Pain management strategies.

People with spina bifida often experience pain that can be debilitating and severe. Clinical psychologist Dr Pamela Seaton told Spina Bifida Hydrocephalus Queensland the goal is not to eliminate the pain but to “reduce it as much as possible to live the best quality of life that you can.”

Dr Seaton shared several practical pain management strategies:

• Have a daily pain management routine
• Learn how to connect with your body to identify and address the first signs
• Stress, anxiety and depression can make your experience of pain worse, so take care of your mental health
• Take medication as prescribed
• Use activity pacing alongside medication – do more physical activities immediately after taking medication and rest when the effect is weakening.

How the NDIS can help.

The NDIS provides lifelong support for people with permanent disabilities and their families. For people with spina bifida and/or hydrocephalus who meet the eligibility requirements, the NDIS may fund a range of reasonable and necessary supports.

Relevant supports the NDIS may fund include:

• Mobility aids
• Speech and language therapy
• Employment capacity building
• Occupational therapy
• Physiotherapy
• Speech and language therapy
• Aquatic or hydrotherapy
• Continence support
• Home modifications and vehicle modifications
• Support workers to assist with everyday tasks or get to medical appointments.

Click on the above links to access previous Leap in! stories about these topics and NDIS-related tips.

Connect with providers today!

Did you know that Leap in! plan management can help you connect with providers near you, matched to the budgets available in your NDIS Plan? It’s just one of a number of ways we support our Members. Learn more about Leap in! plan management or take a look at our Provider Network Directory.

Do you have a question or would you like more information? Speak to a member of our crew on 1300 05 78 78, email us at crew@leapin.com.au or chat via our website (online chat available).

Further reading

Psychologists: What they do and how they can help you.

The Scuba Gym: The underwater therapy achieving incredible results.

How exercise physiology can help with your NDIS goals.

[1] Spina Bifida Hydrocephalus Queensland, Understanding Spina Bifida, accessed 20 October 2021.
[2] Healthline, What is spina bifida? published 4 August 2017.
[3] Cleveland Clinic, Spina Bifida, updated 28 January 2020.
[4] Spina Bifida Hydrocephalus Queensland, Understanding Hydrocephalus, accessed 20 October 2021.
[5] Mayo Clinic, Hydrocephalus, accessed 20 October 2021.