August 9, 2024
Our CMV Story: Henry’s ExperienceSubmitted by Rylea Bromley.
I wrote my first post about cCMV three years ago. Since then, a lot has changed, yet not nearly enough has.
Jasper is now three. He is still a happy, albeit spicier, little peanut who loves to make us laugh, sing, and adores his big brother. He meets every obstacle like a small but mighty wrecking ball. He fears going to the hairdresser much more than going to the doctor. He is brave and clever, lighting up a room with his dimpled smile and mischievous blue eyes.
He has gone from weekly checkups and appointments to monthly, and now only occasionally. His hearing loss seems to have plateaued. We adore him exactly as he is, but despite this, we would still turn back time and do whatever we could to prevent the infection and provide him with a life with fewer challenges.
Our fears and concerns have faded, but each time I think about the moment we received the diagnosis, I am overwhelmed with emotion and heartbreak as if it were yesterday. This powerful emotion arises from knowing that so many parents are still receiving this diagnosis and are left overcome with fear of what it will mean for their little one and their family.
I admire the work of CMV Canada in advocating for newborn screening and am impressed with the changes this group has achieved. The screening that led to Jasper’s diagnosis was pivotal in connecting us with resources to help him thrive. I cannot imagine what his future could have been like without it, and I’m so grateful to live in Ontario, where provincial newborn screening for CMV is available.
However, this is not enough. We need a vaccine and must work towards preventing the infection in the first place. I am confident that I will see this happen in my lifetime, ensuring that parents will no longer have to endure the worry of wondering how this diagnosis will impact their perfect little one. I am hopeful we can create a future where cCMV is no longer a threat and every child can grow up without the shadows of this diagnosis.