Myelomeningocele (spina bifida) is considered the most common neural tube defect and a major cause of chronic disability, affecting between 70,000 and 100,000 individuals in the United States.
Individuals with spina bifida may exhibit weakness and an absence of sensation affecting the lower extremities. In addition, bowel and bladder dysfunction may occur, depending upon the location of the spinal lesion.
Several physical impairments characterize Spina Bifida, such as orthopedic abnormalities: unbalanced muscle recruitment, decreased sensation in the lower extremities, and in some cases, it can even lead to paralysis.
Some of these health concerns progress slowly, others arise acutely, and still, others become chronic due to neurologic dysfunction.
The primary purpose of orthopedic treatment for individuals with SB is to correct physical deformities and to improve overall function.
An important aspect of physical rehabilitation includes ambulation training (gait and posture) using orthoses. In addition, orthopedic training may assist in correcting neurological dysfunction.
It can be challenging to design an orthopedic treatment plan for an individual with SB because of the multiple medical conditions that must be considered when developing a treatment plan.
These chronic conditions include:
- Spinal cord complications
- Central nervous system
- Bowel incontinence
- Urinary tract complications
- Insensate skin
- Latex allergy
Early evaluation is essential, and starts with an identification of the level of disability. Manual muscle testing can be applied to identify physical dysfunctions such as impairments in the spine, hips, or knees.
The orthopedic evaluation includes an examination of:
- Range of motion
- Sensory function
- Assessment of deformity
- Motor function
Ambulation refers to the ability to walk without any assistance. It is usually addressed in individuals who undergo physical therapy.
Ambulation training is a highly important aspect for individuals with Spina bifida. It enables them to acquire complete independence and to have greater success in performing activities of daily living (ADLs).
A strong predictor for the maintenance of gait and ambulation in adulthood is associated with the muscle strength of the quadriceps, hamstring, gluteus, and iliopsoas.
Deformity of the spine is a commonly occurring orthopedic impairment in individuals with SB. Internal and external factors can manifest other deforming conditions, including scoliosis, kyphosis, or lordosis.
Back pain due to muscle fatigue can be a direct cause of these deformities. It may also affect physical appearance, which can have a determinate effect on one’s self-image and social interactions.
Similar to spine deformities, deformities in the hip area result from muscle imbalance. Hip deformity can be present as contracture, dislocation, or subluxation.
Contractures are most commonly released through a surgical treatment that focuses on maintaining the hip’s range of motion. Yet, undergoing surgery always involves the risk of surgical complications such as permanent paralysis.
Foot and Ankle
Eighty to ninety percent of individuals with SB present with foot deformities such as clubfoot, calcaneus, varus, valgus, and vertical talus.
Physiotherapy intervention, such as using foot braces, can be an effective approach to treating foot deformities. However, bracing can also cause pressure points and pain when wearing shoes and affect appearance.
The Real Perspective – Awareness Overload Team: Living with Spina Bifida
It’s difficult to write about being born with Spina Bifida without sounding dramatic. From the second you are born, the drama starts. Your parents are told you may not live through the night, and then they are told you might not survive the surgery to close your back. In a way, it can overshadow the joy of having a new baby because as a parent, you don’t get much time to enjoy the moment. I was born with a form of Spina Bifida. Given the seriousness of the operation to close my back, I was baptized at the hospital.
As a child, I was just a child. I did what other kids on my street did, often just in a different way. I played in goal at football games and propelled my skateboard with my hands instead of my feet. For the most part, I was fully embraced in the community. My grandfather worked as an engineer for Aerlingus and made me a handcycle from disused airplane parts. My handcycle was a novelty for the kids on the street and gave me a new level of freedom and popularity. I have to say; as a child, I was never teased for having a disability. I was teased for being overweight, so the handcycle was a way for me to lose some weight. I was always aware I was different, and I was ok with it. Everyone else seemed to be, too. I learned what disability meant and that it applied to me, but didn’t realize that for some people, it was a dirty word.
That changed when I reached school age. I was raised primarily by my mam, as my dad died when I was three. I remember that we experienced discrimination and had to fight for everything we got. The common opinion among ableists—that people with disabilities have everything handed to them—is so far from the truth. Mam had to give up her job soon after dad died due to all my hospital visits. To date, I’ve had roughly 12 surgeries, 90% associated with Spina Bifida. They include having my back closed at birth, straightening my feet, and relocating my dislocated hips. The surgeries slowed down by primary school.
For me, every educational setting I’ve been in from primary to college highlighted my disability in negative ways, from being excluded at PE to being bullied by a college professor. This was when the social gap began to form between my peers and me. By being excluded from various things, it became more difficult to relate to my non-disabled classmates and friends.
By the time I was doing my junior cert, I was heavily involved in sport, mainly athletics. Sport has primarily molded me into the person I am today. It has given me various transferable skills and allowed me to apply them to my life. However, it’s also another part of my life where inequality exists. For ten years, I competed at an elite level, yet nobody knows who I am. My non-disabled counterpart would have been offered sponsorship deals and would be living a higher standard of life. Having the opportunity to travel the world while competing showed me how different countries treat people with disabilities. In some countries, I felt fully embraced, yet in others, I felt worthless.
I think all of these inequalities stem from the perception that disability means “less.” “You can’t, you won’t, you shouldn’t” were commonly held opinions and still are for many people with disabilities. When faced with this attitude, you begin to absorb it and learn to just “get on with it and stay in your box.”
Having a disability is expensive. I pay for my own wheelchairs (plural) and accessories. Wheelchairs cost about €5,000 on average, and even a cushion can cost €500. Even with medical cards and health insurance, a lot of my income is spent on my disability. Aftercare (a warranty) for wheelchairs is practically non-existent in Ireland, and so the idea that my chair could break down frightens me. If it stops working, so do I.
I know this all sounds like a massive hardship, but if this has been your life since birth, it’s normal. It’s not something I consciously think about every day. If someone ends up in a wheelchair as a result of an accident, they have to adapt to a whole new way of life. That must be extremely hard, but this is normal for me. The one thing that has changed for me is that I’m not willing to “stay in my box.” I want the same things in life as everyone else, so I always try to find a way to push back. If I have an issue, I do all I can to resolve it. I’ve had my mam’s backing since day one. Instead of saying, “You can’t, you won’t, you shouldn’t,” it was very much, “Try and see what happens.” She literally encouraged me to push myself.
There has never been a day in my life that I wished I could walk. People generally don’t understand that and openly accuse me of lying when I say that. My life has been enriched by so many amazing experiences and people; I might not have had these experiences or met these people if I didn’t have a disability. Yes, there are aspects of my disability I wish didn’t exist, but otherwise, it’s not a bad life.
The biggest challenge, really, is society’s perception of people with disabilities. That is a daily struggle. I am constantly underestimated and undervalued. When buying a wheelchair, my number one criterion is that people must see me before they see my wheelchair. I’ve managed to achieve this, and I have seen a slight shift in attitude towards me. First and foremost, though, you must embrace your disability. If you are comfortable with who you are, you will project that. This has been important in job interviews. In interviews, you are often asked, “What do you bring to the job that others might not?” Obviously, your answer will depend on the job, but I generally use my disability in my reply. You shouldn’t underestimate the life skills your disability has given you, and you can likely apply them to the job.
The same applies to dating. Dating is one of the biggest challenges in my life. I am an introvert, so I really have to dig deep to put myself forward and “promote” myself. I make it clear I’m not easily offended, and I’m fully open to questions. Even so, very few are willing to give me a chance. Maybe people think they will be sacrificing parts of life if they date me or that they will end up as my career, but that really isn’t the case. Yes, it will be different from dating an able-bodied guy, but not necessarily less fulfilling. This is obviously just my experience. I know other people with disabilities who have had more success in the dating scene.
I think society’s attitude and their perception of disability is the number one thing that has held me back from fully participating in life. Yes, I’ve had successes, but I’ve had to fight harder for them than others with no disability. Having to prove yourself and advocate for others daily is exhausting. I want to live in a world where I can fully participate in society without so many barriers and expenses. The fear of losing my job or my chair breaking down is very real. Even with a job, I have to ration the medical equipment I need because I can’t afford it all at once. This could be detrimental to my health.
In the long run, I’ll continue to advocate for people with disabilities in hopes we can all live in a more egalitarian society.