Living with Congenital Rubella Syndrome: “You get called stupid or slow. You aren’t. I’m not.”

This is the first in a two part series on Kimberly Cowley, a 50+year survivor of Congenital Rubella Syndrome (CRS). Kim reached out to the Measles & Rubella Partnership to tell her story. A fierce advocate for vaccination, Kim wants others to realize the burden that CRS, an easily vaccine-preventable disease, places on those infected and their families. If I can save just one life, by telling, teaching and pushing for vaccination, she said, then I know it’s all been worth it.

On her second day of life, Kimberly Cowley had congestive heart failure. Considering the vast array of health issues she had been born with—hearing and vision loss, a rare condition known as Tetralogy of Fallot caused by a combination of four heart defects, any one which is a killer—expectations of survival were low. Kimberly had Congenital Rubella Syndrome (CRS), a condition that happens when a pregnant mother contracts rubella during pregnancy.

Against all odds, Kimberly survived, celebrating her 50th birthday last Fall, but the road has been long and often painful.

Born in Hamilton, Canada in 1964, Kimberly spent the first two months of her life in the hospital. Her parents were young and shortly after marriage, her mother became sick. She thought it might be a bout of flu. And then once she learned she was pregnant, she thought maybe that was why she felt unwell. It was neither.

Her mother later learned that it had been rubella; having come into contact with an infected relative in her first trimester. In 1964, the rubella vaccine was still five years away from being available. When Kimberly was diagnosed with congestive heart failure that second day in the hospital, her parents realized the problems were much bigger than they had thought.

Those first two months were a whirlwind of tests: tests on oxygen levels, tests to determine the extent of damage to her heart, tests for her eyes and ears to see how profound the damage was. They found that the nerve damage on her right side was complete and catastrophic, meaning there was no way to repair her right eye or ear. All Kimberly’s parents were told was that they would have to wait until later in life to see how this translated in reality.

Like most children, Kimberly started school at age 5. But in all other ways, she was profoundly different from the other kids in her class. Physically, she was the size of a small three year-old, and school was an immense challenge. Given no special tools, Kimberly was expected learn at the same rate as her classmates while missing most of two of her senses.

“Learning is difficult because so much of learning is a visual and audio skill,” Kimberly said. “It’s difficult when you miss half or more of the cues. You get called stupid or slow. You aren’t. I’m not. I just didn’t hear or see what I was being taught.”

Seeing was difficult even while sitting at the front of classrooms and she often missed spoken instructions if the teacher turned towards the chalkboard, or some other noise carried over speech, confusing or muffling what she heard. Often at the wrong end of frustrated and angry teachers who truly expected her to be like everyone else, Kimberly learned to bluff her way through school and to pick up what she needed to know by reading about it later.

School was exhausting. After eight hours of concentrating to hear, see and keep up, she craved silence and to be left alone, meaning ‘after school friends’ were few and far between. Often lonely, she grew up being bullied and picked on for her differences. The teasing was relentless, daily, and something that never became easier.

Kimberly’s parents were at a loss, not knowing what to do or how to cope. At a young age, she started detaching herself from her family, not knowing what else to do or how to cope with a world that didn’t comprehend her needs. A world that unfortunately included her own parents. “I needed advocates and they just weren’t,” she said. “My mother had been a bully at school herself and continued that behavior with me. She was unable to relate to my disability. There was name calling (“freak, chicken chest, weird”) and more. It was hard to get close to my father or brothers too because they didn’t try to get close to me.”

Unfortunately, Kimberly’s struggles only worsened, facing open heart surgery at age 11.

For more on Kim’s struggles with CRS, and how living 50+years with CRS has turned her into a staunch advocate for vaccinations, click here for the second part of the series.

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