Spina bifida is a developmental defect from birth characterised by incomplete closure of the spine during foetal development which causes a gap in the spine. It presents a lot of physical challenges but also has a significant impact on mental well-being. All around the world, individuals living with spina bifida often live with mental health issues due to the condition's physical limitations, societal judgement, and personal struggles.

Recognising the crucial connection between physical and mental health, this article delves into the field of mental health support for individuals with spina bifida. By understanding the unique challenges they face, and identifying issues surrounding support, we aim to improve the care that addresses both the physical and psychological limitations of living with spina bifida.

What is spina bifida?

The neural tube is the structure that develops in early pregnancy and forms a baby’s brain and spinal cord. When the baby’s neural tube does not develop properly, it does not close the gap in the spine causing defects in the spinal cord and vertebrae, known as spina bifida.¹ Symptoms of spina bifida occur due to the damaged nervous system, they may include:^1,2

• Weak or paralysed legs
• Bowel and urinary incontinence
• Inability to feel any sensations like hot or cold in the legs and around the bottom

There are four types of spina bifida which affect every patient differently:

There is no concrete evidence of what causes spina bifida, but there are possible risk factors, such as genetics, nutrition, and environment. Pregnant women adding folic acid to their diet have shown a profound reduction in the risk of having a child with spina bifida, according to studies. In some cases, patients and even foetuses may need to undergo surgery depending on the suggestion of the healthcare specialists.²

Mental health challenges in spina bifida

Children with spina bifida tend to have more internalising symptoms, such as anxiety and depression, and externalising symptoms like aggressive and impulsive behaviour compared to peers without the condition.^3,4 To understand how spina bifida can impact mental health, you need to view the psychology behind brain development, social awareness, and quality of life. 

When children with spina bifida were evaluated, the test scores were usually below average for attention and executive function, which are our working memory, flexible thinking, and self-control. This could be due to hydrocephalus, which affects brain development and occurs mostly in those with myelomeningocele type of spina bifida.⁴ Hence, low attention span and poor executive function could be the reason why these children have internalising symptoms and have trouble socialising. 

Another study showed that children with spina bifida tended to be unable to socialise, unlikely to have friends outside of school, depended more on adults, were less competent in academics, less likely to make independent choices, and more likely to have a short attention span.⁵ 

In addition, the symptoms of spina bifida pose a challenge to many patients who are unable to walk properly due to the condition and possibly the pain. They might need assistance or walking aids, such as braces, crutches or walkers. If you have spina bifida on the higher end of your spine near your head, you might have paralysed legs and need a wheelchair to move around.⁶ Thus, these patients are known to be generally less physically active.⁴ As exercise is supposed to improve our mental health and well-being, this could cause the patients to have low mood and low self-esteem.

Teenagers with severe spina bifida obtain most of their independent decision-making skills two to five years later than their peers without the condition.⁷ This could be a major underlying reason as to why they would feel like they cannot keep up with their peers or easily make friends with others of the same age.

Moreover, some people with spina bifida cannot control the urge to go to the bathroom. This could limit some patients from travelling far because of the inconvenience. Also, if they had embarrassing incidents when they were younger, they might be traumatised by societal judgement. Thus the lack of going out and socialising could be another factor for anxiety and depression. 

Strategies for improving mental health support

Early intervention and screening programmes are essential for preventing the mental health decline in spina bifida patients. Unfortunately, there are challenges faced such as environmental and equipment accessibility. Patients often need mobility support and may be unable to get onto the examination table in the doctor's room. Health professionals should be patient and give them the best care by communicating with the patient and coordinating their hospital visits carefully. 

Some medical professionals not trained in spina bifida may not know the symptoms when they are presented, so often they are unaware and the patient might be diagnosed with something else. Routine history checks may miss out on changes in mobility, and this should be addressed and changed for better chances of getting treated earlier.⁸ 

Furthermore, the carers of babies and children with spina bifida should be counselled on the importance of bringing them to routine health appointments. They should also be advised on health promotion suitable to the baby or child’s age, such as car seats, nutrition, developmental difficulties, and bladder and bowel management. They would need special bathroom schedules to be planned out to avoid embarrassment. Healthcare professionals can help to develop a personalised plan for everyone to improve their independence and confidence.⁸ 

Having support from friends and family who are aware and informed about the condition is extremely important. According to Billy from the Shine website, “Being born with spina bifida made me the man I am today, it made me stronger and more determined to prove to the world I am capable of achieving whatever I want. I was raised in a family and community that never treated me any differently than an able-bodied child, all the same rules and principles applied, I believe this gave me my “get on with it” attitude.” 

Patients with spina bifida have shown to have a good quality of life, particularly when they feel positive about their medical condition, have great future expectations and are happy with their family life.⁹ 

FAQs

Are there any available mental health support services?

Yes, there are. In the UK, there is a charity called Shine that gives various help to patients and carers who are new to the spina bifida diagnosis. In the USA, there is the Spina Bifida Association which provides various resources and additional support. 

Summary

Many patients with spina bifida struggle with their mental health and it is important for healthcare professionals and relevant charities to follow up with them through counselling, therapy and hospital visits. The support from carers, friends and families can contribute to a better quality of life and allow patients to learn to be more independent when they are adults.

Through early intervention, education, and better mental health services for spina bifida care, we can strive towards a more supportive environment that reduces the social stigma and improves the well-being of spina bifida patients.