Brad's Story
Living with VACTERL Association and Kyphoscolioses
Born and living in Canada, Brad shares his lived experience of growing up with VACTERL Association, Kyphoscoliosis and Club Foot. Reflecting on the medical challenges he faced from childhood and the impact of teasing from other children, as well as the strength it took to cope and keep moving forward.
Early Childhood
Throughout my early school years, I wore a Milwaukee brace for about five years, followed by a Boston brace for another five, in an effort to manage my congenital kyphoscoliosis.
Wearing these braces was a daily challenge. I wore them faithfully, hoping they would help, but unfortunately, neither made much difference.
The braces were uncomfortable and restrictive, yet over time, they became a routine part of my life.
They also made me stand out among my peers, and I was sometimes teased or singled out at school for looking different.
Growing up with kyphoscoliosis meant navigating not only physical discomfort but also the social challenges of feeling different and trying to fit in.
Making and maintaining friendships could be difficult.
While some friends were supportive, others didn’t understand what I was going through, and the teasing sometimes left me feeling isolated or self-conscious.
Everyday activities that other kids took for granted, playing sports, sitting comfortably in class, or even wearing certain clothes, often became complicated and required extra effort.
Despite these challenges, I learned resilience and the importance of patience and self-care, lessons that have stayed with me into adulthood.
1972: The concept of VATER (later VACTERL) Association is described
By then I was almost 13 years old, my condition had not yet been recognised within that framework.
In 1979 I underwent posterior Harrington instrumentation at the Foothills Hospital in Calgary, Alberta, Canada. That surgery lasted nine years until 1988, when I was admitted to Toronto General Hospital as my Kyphosis had curved past the instrumentation.
During that procedure, my entire posterior spinal instrumentation was revised, the Harrington rod was removed, and Cotrel-Dubousset instrumentation was performed.
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Unfortunately, my body was rejecting the hardware, causing skin loss on my left scapula, which required a skin graft from my right hip.
My spine was then fused from T1 to L5. Recovery from the spinal fusion was extremely painful and lasted nearly six months. While I retained some neck movement, my back remains quite rigid.
To help with walking, I wear an orthopaedic insole in my right shoe, though I still rely on a walker for longer distances.
Chronic (Restrictive Lung Disease)
My kyphoscoliosis has reduced my chest capacity to less than 40%, which has over time caused restrictive lung disease. Breathing is hard and I struggle to clear my carbon dioxide efficiently. To help with this I use a breathing machine called non-invasive ventilation (NIV), usually at night. This supports my lungs, reduces the carbon dioxide in my blood, and make breathing easier.
I also need extra oxygen to keep my blood oxygen at a safe level, where I feel less short of breath and have more energy. Using both NIV and oxygen together helps me breathe better and makes everyday activities easier.
An MRI of my back and hips is scheduled for this summer as I'm having increased trouble getting around. Most is probably age related, but my back definitely need re-assessing.
Living with a Rare Condition
As an adult I still can feel isolated at times.
There are practical hurdles, like managing breathing difficulties, as well as the emotional impact of navigating health issues that others rarely experience.
Finding connection has made a profound difference.
I value being part of TOFS, where there is a website with lots of useful information and interesting articles. A dedicated Facebook page for adults, as well as a monthly informal virtual “Cuppa and Chat” group. https://tofs.org.uk/
These spaces allow me to meet others who are living with OA TOF (EA/TEF), kyphoscoliosis, and related lung disease. We share experiences, exchange practical advice, and simply feel understood. Being able to connect with others who truly “get it” reduces the sense of isolation. It offers reassurance and provides a network of support that goes beyond the medical care I receive.
These relationships have shown me that, even with rare and complex conditions, community and understanding can make daily challenges more manageable and my life more hopeful, thus improving my quality of life.
Mom and I