A pair of ankle-foot orthoses
June is National Spina Bifida and Hydrocephalus Awareness Month
In support of National Spina Bifida and Hydrocephalus Awareness Month we are exploring the topic of bracing for individuals with spina bifida, from infancy into later years.
Many individuals with spina bifida will use orthoses (braces) at some point in their life. At Boundless we work with families, teenagers and adults with spina bifida.
As parents of a child with spina bifida or a young adult, Certified Orthotists may become part of your child’s circle of care. Certified Orthotists specialize in providing custom-made orthoses (braces). For children, orthoses serve to offer additional support to enhance mobility and motor development. As a child grows-up the design of their orthoses will likely change, but the goal of supporting mobility will remain a constant.
Most parents will be referred to see an Certified Orthotist by their family doctor or physiotherapist. But, most parents are not familiar with orthoses (braces) or the work of Certified Orthotists and may have many questions.
We reached out to parents of children born with spina bifida and adults born with spina bifida who we work with to ask them about their experiences.
Experiences of Parents
What was your reaction when you were told your child may need to use braces?
(Andrew): “...we were concerned and worried that he may never walk, especially without aids, but also hopefully that there were tools to help him walk and be more independent and mobile”
(Sherry): “I was ok with it. I think the initial shock for me was the nerve in his leg no longer working due to tethering in his spine. Once this was realized we took immediate action in getting him what he needed. It is what it is and there wasn't anything that doctors could do to fix it so we did what could be done. We only had to adjust to life with a brace. It wasn't an issue for us in any way.
(Boundless Orthotist): We recognize the entire family goes through an adjustment as a child's braces become a regular part of life. This is why we schedule follow-up appointments with families to check-in and see how each child is doing. Often, children with spina bifida are quick to reach new levels of mobility once they have their orthoses.
How did your child react to using their orthoses?
(Andrew) “He loved his braces. We had to break them in properly, as his legs were getting bruises. Overall he was extremely excited to have them and to practice standing safely with them on.”
(Sherry) “He thought his AFOs were cool because they were (decorated with) Lightning Mcqueen. He adapted very well. He did get tired of wearing them the first week and some discomfort during the initial adjustment period. But he understood they were there to help him.”
(Boundless Orthotist): Following a gradual wear schedule (link) for every new brace is important. Braces should never hurt. Because individuals with spina bifida often have reduced skin sensation doing skin checks is advised (link).
off for a bike ride with his AFO
busy at home with his AFO
What would you say to the parent of a child who is referred to see an Orthotist for braces?
(Andrew) “Braces really help our son. Watch for redness, put them on properly and make sure your orthotist has all of the information from your physiotherapist. And right and left labels really help!”
(Sherry) “Only have compassion for your child. Things will be different but it is your new normal. Support your child. Slow down, because your child will have to adjust to life differently. It will take some time for them to catch up to this big fast-paced world. Slow down and have compassion.”
No Longer Children, Living with Orthoses
For individuals with spina bifida an orthoses may become a tool used throughout their life. Daniel Day (25 years old) and Peter Locker (43 years old) were both born with spina bifida and continue to use their orthoses on a daily basis.
Hello, I am Daniel Day. I am 25 years old, and was born with lipomyelomeningocele at L1/2 level.
At the age of 5 I had a spinal fusion and started wearing an AFO on my right leg and a KAFO on my left leg in order for me to be mobile. Wearing braces and using a cane are a way of life for me and help me be more mobile to keep up with my friends when we go downtown together (they see me as more normal so they don't wait for me).
Hello, I am Peter Locker. I am 43 years old, and born with spina bifida and hydrocephalus.
Admittedly, wearing braces is a constant challenge. They are bulky, can become uncomfortable after wearing them for a prolonged period of time, and people stare (at them) sometimes. These are a few of the negative things that are inherent about my condition.
Fortunately, orthotics have allowed me to experience so many great things that I would have otherwise missed out on; my passion for biking, having a profession I love, getting married, to name just a few. Orthoses have allowed me to experience the life I want to have and for that I am truly grateful.
Orthoses, Here for the Journey Ahead
For individuals born with spina bifida orthoses (braces) often become a significant tool for maintaining mobility. As Orthotists we are here to explore the questions new parents have and celebrate the achievement of new milestones with young patients. Our work is never done, making devices that work better for our clients as these children grow into adulthood.
Schedule a consultation with an orthotist to learn more about bracing or stay connected with us through our social media