Don’t Expect This Baby to Live...

By Victoria Musgrave

Those were the words my parents heard from the doctor just hours after my birth. I’ve spent my life defying the words of that doctor. Weighing just two pounds, twelve ounces, I was born with spina bifida, a congenital condition that my parents had never heard of before. They would soon learn more than they ever wanted to know.

Four days after I was born I was sent to the Hospital for Sick Children where I received surgery to close the lesion on my back. The doctors were cautious about my future and weren’t certain if I would be able to walk, but Mom had faith that I would walk because I’d been kicking her in her womb. She went home with just the ID bracelet that had been taped to my incubator.

I was sent home two months later, a tiny Father’s Day present. My father would hold me in his arms; my head in his hand and my feet in the crook of his elbow.

At 18 months, I began taking my first steps. Soon I was running all over the place. I was also fortunate to have normal bladder and bowel function. Once again, I’d proved the doctors wrong.

For me, the most difficult part of growing up with spina bifida was its impact on my body image and self esteem. I have scoliosis and walk with a slight limp. I also reached my full height of 4’7” at the age of 12. During my childhood, I found people weren’t very accepting of disabilities or body differences. I endured years of teasing from other children and I’ve heard every taunt that has ever been flung at a short person.

By the time I was a teenager, I felt ashamed of my spina bifida and didn’t like to talk about it.

I couldn’t appreciate what I could do with my body; I could only see what was wrong with it. I hid under baggy sweaters, didn’t go to school dances or date, and couldn’t imagine anyone liking me because of the way my body looked. I turned in on myself and spent a lot of time alone reading and doing my homework. As a result, I excelled in school, graduated from the University of Toronto and earned a diploma in Journalism from Humber College.

After finishing school, I first worked as an editor and then in public relations for a non-profit organization. I was spending long days sitting in front of a computer and began looking for a physical activity that would be fun and keep me in shape. I remembered enjoying figure skating as a child and joined a local skating club. I was lucky to find a coach and a group of people who were encouraging and supportive. Eventually, I entered a couple of competitions, competing against able-bodied adults and even winning a couple of medals. I appeared on the ice in revealing skating dresses – something I wouldn’t have dreamt of doing as a teenager.

Then, in March 2004, everything changed. I began experiencing pain in my hips. At first my doctor thought it was bursitis, but none of the treatments worked and the pain got worse, spreading to my back. By September 2004, I was in constant pain, began losing feeling in my feet and legs and, for the first time in my life, began having bladder problems. I was terrified, depressed and couldn’t understand why this was happening to me.

Fortunately, I reached out to the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) and was quickly sent a list of recommended doctors, information sheets and medical journal articles about the secondary conditions that adults with spina bifida often experience. I took this information to my family physician who arranged for an MRI and a referral to a neurosurgeon just two weeks later. I was diagnosed with tethered cord syndrome, a condition where scar tissue adheres to the spinal cord causing damage to the nerves. If I didn’t have surgery, I would eventually be paralyzed from the waist down.

In February 2005, I underwent a five-hour operation to release my spinal cord and remove a piece of vertebrae that was splitting the cord in two. To the relief of everyone, I was able to wiggle my toes as soon as I woke up and walked out of the hospital six days later. It took seven months for the worst of the pain to subside and to regain my strength before I was able to go back to work. Eventually I regained the feeling in my feet and legs and my bladder function returned to normal. Soon, I hope to figure skate again.

Today, I have a much greater appreciation for how lucky I’ve been. I’m grateful to SB&H for all the information and support they’ve provided to me through this difficult period. No matter how much pain I was in or how low I was feeling, I knew I had an organization I could turn to for support. I knew I wasn’t alone and that other adults had gone through similar experiences. I’ve also learned from other adults with spina bifida that the biggest limitation to having spina bifida is attitude. It’s a cliché, but life really is what you make of it, and I still have much to make of my life.