Spina Bifida Awareness Week encourages us to look at the Spina Bifida facts, and celebrate our Spina Bifida community
Each year the first week of September in Australia is dedicated to raising awareness in the wider community about their members living with the Spina Bifida – a rare health condition that affects around 5000 Australians. Here at ConnectAbility, we love participating in and sharing our knowledge about the clients we love and support. Activities and information distributed during this time are developed with a view to educating and boosting the knowledge in our local areas about Spina Bifida, and how to be considerate of and inclusive of those who live with the condition. While living with Spina Bifida presents significant challenges to those diagnosed with it, their challenges are unique and vary widely. Likewise, their contributions to our society are shaped by this uniqueness – their struggles, triumphs and special skills make for a richer and more compassionate society.
What is spina bifida?
Spina Bifida is a condition that occurs during the development of a foetus in the womb, and is where the spinal cord and spine do not form properly. It is commonly referred to as a neural tube defect, a term that encompasses the developing brain, spinal cord and surrounding tissues. Generally speaking, the condition is where there has been an incomplete closure of the neural tube, which leads to an incompletely formed spinal tube. There are varying degrees of incomplete spinal closures, and these result in different types of Spina Bifida which have varying levels of severity – or effects – on those living with the condition.
Why does Spina Bifida occur?
To date, the true cause of Spina Bifida remains shrouded in mystery. The formation of the human body is truly complex, and the causes of many birth defects remains unknown to this day – sometimes they simply happen. Examples of this can be seen in every part of nature, every biological living thing can form differently for sometimes no known reason. The best answer is that it is caused by a number of factors that include genetic, environmental and nutritional components interacting in a way that results in Spina Bifida – though this recipe still remains unknown for now. Multiple research studies have linked low levels of Folic acid in mothers – a type of Vitamin B – to increased risk of Spina Bifida in infants. As such, pre-natal vitamin supplements containing Folic acid and Vitamin B complexes is strongly encouraged to all pregnant women.
The different types of spina bifida
There is more than one way for the spinal area and tube to be affected by incomplete formation, and these degrees of variance fall into three main categories. Depending on how exposed the neural tube and spinal cord are, the severity of symptoms for those diagnosed with this condition can vary. Usually, the less enclosed the neural tube and spinal cord are by the spine, the more serious the condition can be.
Spina Bifida Occulta
This type of Spina Bifida is where a small part of the backbone may not develop properly in a baby, leaving a gap between vertebrae or bones and leaving the spinal cord partially exposed and a little more vulnerable to harm. Others with this form of Spina Bifida may also have a tethered cord – a section of spinal cord that cannot move around freely within the spine. This may need to be corrected surgically to prevent it stretching during growth spurts or sporting activities, as this stretching can lead to pain that causes trouble walking or reduced bladder control.
This is the most common form of Spina Bifida, and occurs at very high rate – around 10% of the population has a tiny spinal irregularity that puts them in this group. Because there are usually no side effects or symptoms associated with this type of Spina Bifida, sufferers often never know of the abnormality and live a full and healthy life undiagnosed.
Spina Bifida Meningocele
This form of Spina Bifida can cause minor disabilities, and occurs when a sac of fluid forms in the opening of the spine. However, this sac of fluid is simply an opening that exposes the spinal cord more openly that the Occulta type does. The sac itself does not contain the spinal cord and there is usually little to no nerve damage associated with this form of Spina Bifida.
Spina Bifida Myelomeningocele
The most serious of all Spina Bifida types, this is the condition most people think of when the term ‘Spina Bifida’ is mentioned. In this scenario, a baby has an opening the spine which has allowed a sac of fluid to protrude which also contains part of their spinal cord. This is an extremely serious condition, with the spinal cord critically exposed to potential damage. In most cases, doctors will attempt to correct this surgically whilst the foetus is still in the womb – a major surgery for both mother and child. Those diagnosed with this type of Spina Bifida can suffer from severe disabilities that will require the support of family, friends and a specialist to navigate.
Living with Spina Bifida
Spina Bifida can affect those diagnosed with the condition in very different ways, and so the ways that they might live with it will also differ greatly. Some may never know of their condition, with symptoms so mild or non-existent that they never have it diagnosed. It can also be so mild that it simply blends in with other common aches, pains and difficulties that people expect to suffer at some point or another. Others will have clear diagnoses and equally telling symptoms and these can include:
- Limitations in their mobility directions
- Weakness or paralysis in the legs and lower body
- Bladder and/or bowel incontinence
- Loss of, or decreased sensation in the legs and bottom
- Learning difficulties
- Deformities of the spine, such as scoliosis
- Some sexual dysfunction in relation to sensation and erectile function
- Chiari malformation – where the opening occurs in the upper spine at the back of the brain, leading to potential breathing difficulties, swallowing problems, eye movements and fluid build-up that can cause Hydrocephalus.
Despite these symptoms, people with Spina Bifida can live incredibly full and rewarding lives. Spina Bifida life expectancy for those with the condition is now greatly improved, with most living well into adulthood and on par with their non-affected peers. Of course it is worth noting that those with Spina Bifida require a higher level of care and attention to extend their lives, with their condition giving them higher exposure to the likelihood of accidents, injury, infection, linked conditions and in some cases, social disadvantage.
Management of Spina Bifida
Because each individual with the condition will have very different symptoms, they will be managed by doctors and specialists on a unique case-by-case basis. There is no cure for Spina Bifida, but it can be managed by a number of therapies, aids and treatments including:
- Surgical treatment – this will most commonly occur in the womb or straight after birth. Though occasionally it may be performed where a tethered spinal cord or anomaly is picked up later in life if it begins to cause noticeable issues. Some children may need hip, leg or foot surgery at some life stages once their unique symptoms become clearer.
- Physical aides – These might assist with mobility where walking has become a challenge. Common types of aides include walking sticks, crutches, walkers and wheelchairs.
- Learning and development support – where learning difficulties arise, there are a myriad of support options. Extra tutoring, specialised learning approaches and a general increase in support and time given to achieving outcomes can ensure that learners remain on par with their peers.
- Physical therapy – The use of physiotherapists, podiatrists, exercise physiologists and other movement specialists is critical for most sufferers of Spina Bifida in treating their physical symptoms as well as learning to manage them in an ongoing way.
- Occupational Therapists – these specialists play a role in making sure the environment that those with Spina Bifida are living and working in is well equipped to ensure their comfort, success and wellbeing.
How to support people with Spina Bifida in your community
The best way to support your friends, family members and people in your community living with Spina Bifida is to educate yourself. It doesn’t take long – if you read all the way to the end of this article, you already know more than most! Other great things that you can do include:
- Donate to a cause – support a Spina Bifida charity like the Spina Bifida Foundation Victoria or local disability organisation financially, to help them create better resources, provide more support to their special little community and get better access to assistance
- Volunteer your time – give your time to organisations who run activities for people with Spina Bifida and other disabilities. Sometimes they just need the smallest assistance from the rest of us to live their dreams. A great place to start is the Hunter Volunteer Centre, servicing our local community.
- Educate yourself – read up on the issue on the Spina Bifida Association website, and let that direct your journey. Maybe you’ll seek out someone with the condition for a great conversation, it might lead you down an interesting path such as inspiring a career or lifestyle change. No matter the result, having a better understanding means having more compassion.
The real take-away here is that while living with Spina Bifida can severely affect the lives of those diagnosed with it, it certainly does not diminish them as people or as wonderful inclusions in our society.
Here at ConnectAbility, we are extremely proud to support and care for our clients with Spina bifida and keep our community connected through education and activities. If you’re interested in knowing more about how you can become involved with us, or giving more support to your local community members living with disability – call or email us today and get the right information.