Spina bifida is a birth defect that affects around six babies in every 10,000. It’s not fully understood why it occurs in many cases, but in some rare instances it can be part of a genetic condition that runs in families.
A bit of background
Spina bifida literally means ‘split spine.’ It’s a type of neural tube defect that occurs during early pregnancy. The neural tube is the structure that will develop into the baby’s brain and spinal cord. In a normal pregnancy, the neural tube begins to form very early on, and closes around four weeks after conception. In spina bifida, part of the neural tube doesn’t develop or close properly, which leads to defects in the spinal cord and bones of the spine. In many cases babies with spina bifida will also develop hydrocephalus, where further damage can happen as fluid builds up on the brain.
The damage spina bifida causes to the nervous system can lead to problems such as weakness or paralysis of the legs, issues with bowel and bladder function, and some people with spina bifida can have learning difficulties.
Shine so bright
We know how much spina bifida can affect individuals and their loved ones’ lives. That’s why we support Shine, a charity that provides specialist advice and support for spina bifida and hydrocephalus in England, Wales and Northern Ireland.
Shine was founded in 1966 to help support families and individuals affected by spina bifida and hydrocephalus. Fast forward over 50 years to now, and the charity is now a community of 75,000 people sharing achievements, challenges and information on living with spina bifida or hydrocephalus.
In October of this year, Shine took part in Spina Bifida Awareness Week, hosting a series of webinars for both parents of children with the condition, and young people and adults.
Leo’s Story
Our client Leo was born with a form of spina bifida, lipomyelomeningocele. This is one of the most severe forms of spina bifida, requiring surgery soon after birth. His parents, Faye and Marc, were told that his condition would affect his walking, and likely his bladder and bowel function too.
Prior to his birth, his mother had been to all her routine scan appointments and was told that everything was “fine”, so his diagnosis came as a shock to Faye and Marc. After he was diagnosed, our team of experts supported his parents in finding out whether his condition should have been picked up during her pregnancy.
Our team was successful, and their success means Leo now has access to the specialist therapies and support he needs. Throughout the process, Faye and Marc received vital support and information from Shine, and they started going to meetings with other families affected by the condition.
Mum Faye said: “Shine really helped, and we will always be grateful for the support they gave us.
She added: “As he got older, Leo’s biggest challenge was accepting he was different, as he enjoys playing on his Playstation like any other boy his age. He also plays on an electronic dirt bike in the field behind our house, but it can be difficult for him to keep up with the other children and he will always need that extra support.
“We’ve shown him videos of Paralympians to prove that there are so many different people in the world with many different disabilities, and the main thing in life is not to let it hold you back from your dreams and what you want to achieve. We are devoted to him and are determined to make sure he has the best life possible.”
Guy Forster, our expert who supported them through their case, said: “Leo hasn’t had the easiest of starts to life, and he’s had to come to terms with what his spina bifida means for his future.
Through our work, we sadly see many families who face uncertain times due to illnesses and health conditions; we hope that this settlement will make life a little easier for Leo and his family by helping to fund his care, therapy and equipment needs.”
A crucial survey from Shine
Supporting people affected by spina bifida and their families isn’t all this fantastic charity does – they’re also gathering ground-breaking information on how spina bifida affects people as they age.
In April 2020, Shine asked their members aged 25 and over to complete a survey to find out how spina bifida affects their health and lifestyle over time. With an impressive 1082 people completing the survey, the aptly named 1000 Voices survey is the biggest in the UK to take an in-depth look at how spina bifida affects ageing.
Little is known about the way spina bifida affects health and wellbeing as they get older – so the charity took the opportunity to ask questions of their members as many of them are aged 40 and over. The survey covered lifestyle questions about driving, work and living arrangements, to health questions about bones and skin health, mental health, bowels and sleep.
The top takeaways
Mobility was one of the key aspects covered – many respondents stated that their mobility had changed over time, with most changes to mobility occurring around the age of 40. Using wheelchairs, sticks and crutches can damage the hands, neck and shoulders. Shine found that those walking unaided were more likely to have no issues with their upper body, where those using mobility support reported more pain and loss of use of their hands. This suggests that using a power chair earlier on could prevent some pain and loss of independence.
For those with restricted mobility, driving can be a lifeline for freedom and independence, especially to those living in rural areas. The survey found that 67% of respondents held a full driving license. Of those that had stopped driving, the causes were mainly medical and health reasons, such as concentration, anxiety or depression, or sleep apnoea.
The nerve damage associated with spina bifida can affect bladder and bowel function – those with the condition can have some difficulty recognising when their bowel is full, which in turn means it can be difficult to manage releasing stools. This then results in constipation, or leakage, or a combination of the two. The survey found that bowel continence can become harder to manage as you age, especially for women post-menopause. Good bowel management can support general health and avoid pressure and moisture sores.
Many of the issues highlighted in the results of the survey are interlinked, so if one symptom were to get worse, it would likely have a knock-on effect on other areas of life. For example if your pain levels were to become worse, this could increase anxiety levels – and anxiety increases the experience of pain, which creates a vicious cycle. This would then impact sleep, and everything’s harder to deal with when you’re not getting enough rest.
The charity believes that the findings of their survey argue the case that specialist care should be undertaken by multidisciplinary teams as the rule rather than the exception – and that their evidence will help pave the way to improving care for those with spina bifida in the future.
To see the full findings in more detail along with more recommendations from the charity, go to their survey results page.
Here to help
To learn more about spina bifida, Shine’s work to raise awareness and support those with the condition, go to the Shine website.
If you’d like to support Shine’s essential work this Christmas with a donation, go to their donation page.
For general enquiries
0808 291 3524
Or we can call you back at a time of your choice
Phone lines are open 24/7, 365 days a year
