Our sweet, loving little boy Henry entered this world on September 2, 2018. I was completely unaware of the challenges that awaited him. It was only after his birth that we discovered he had congenital Cytomegalovirus (cCMV), a condition we had never even heard of. We were shocked to learn that cCMV is a leading cause of non-genetic hearing loss in infants and infant disability.

The first few days were a blur of tests and anxious anticipation. As Henry began to show signs of improvement, I desperately hoped that the doctors would find nothing wrong. But on the fateful third day, we were informed of his diagnosis. The doctor explained the potential risks of cCMV, such as blindness, hearing loss, and developmental delays.

I remember the doctor’s words, asking if we lived with cats and if I had ever been in contact with their litter boxes. It seemed like a million irrelevant questions swimming in my mind. Confusion and disbelief overwhelmed me. How did our precious baby get sick? How did I get sick? I had never even felt unwell. No one warned me about sharing food or drinks, despite CMV being commonly found in young children and daycares. However, it is not a problem unless affected in the womb.

We made the difficult decision to start Henry on antiviral medication, hoping to mitigate the impact of the virus during his first six months of life. Looking back, I wish we had been aware of cCMV from the beginning so we could have started treatment immediately. Throughout my pregnancy, no one had mentioned CMV despite Henry’s consistently small head measurements, a common occurrence in CMV babies. The lack of information and awareness was disheartening.

As parents, we have had to learn to be advocates for our son. The journey has been challenging, lonely, and overwhelming at times. Henry is a bright, strong boy, but we had never imagined that his path would be so difficult. It was only recently, through a Facebook community of other mothers with cCMV babies, that we found a sense of support and understanding.

I am hopeful that someday CMV screening will be a routine part of newborn testing in all provinces. I often think about the children who go undiagnosed, living their lives without knowing the underlying cause of their struggles. It pains me to imagine the learning difficulties or sudden hearing loss they might face later in life, just like my son.

Despite the hardships, I share our story with love and passion, hoping that others won’t feel as alone and unprepared on this journey as we did. Let us bring awareness to the impact of cCMV and work together to ensure that future generations are equipped with the knowledge and support they deserve.