Discovering that my son’s hearing loss was caused by CMV was an overwhelming moment, one that I was entirely unprepared for, seven years ago. The world of CMV and cCMV was a mystery to me, and I received no information or guidance at that critical time. The weight of the diagnosis left me feeling isolated, particularly as we resided in a remote region of Northern Ontario where CMV-related support was virtually nonexistent. The challenges compounded when we had to travel over a thousand kilometers away from home for CMV-related healthcare. However, everything changed when I became a part of the CMV Canada community. The community provided me with vital information, unwavering support, and a lifeline to connect with other parents who had experienced similar circumstances. It was a profound relief to know that we were not alone and that there were others who understood the challenges we faced. 

Discovering the cause of their child’s differences via Google is something no parent should ever have to go through.

Our daughter was born perfectly healthy with a unilateral hearing loss. While we worked to grasp the implications of this permanent condition and its various aspects – audiograms, speech bananas, communication methods, and more, finding out what caused her hearing loss was a key piece of information we felt was missing.

A Google search yielded that congenital CMV was the most likely culprit, and it was a virus we had never heard of before. Reaching out to the CMV community gave us more information about what our daughter was at risk for, what resources we needed to advocate for, and how to get her tested for this virus.

While the unknown can be a difficult partner to walk with, we are grateful to be able to say our daughter and family are doing well. We hope we can make this path easier for the next family and hope our experience helps shape a better survival guide for others.

Before our son Alexandre was born, we had never heard of congenital Cytomegalovirus (cCMV). It was a term unfamiliar to us, and we had no idea about the potential impact it could have on our child’s life. However, fate had different plans for us, and a late ultrasound revealed Alexandre’s CMV infection. It was a blessing in disguise because, without that timely discovery, his condition might have gone unnoticed. The early identification of cCMV infection gave us a valuable opportunity to take immediate action. We were able to start treatment and implement various therapies that were crucial in improving his outcomes. It was a whirlwind of emotions, but we knew we had to be strong for Alexandre.

Today, we are incredibly grateful to see how well Alexandre is doing. Despite the challenges he faced early on, his resilience and the support of an amazing medical team have helped him thrive. His progress has been remarkable, and he continues to amaze us every day with his strength and determination.

While Alexandre’s journey is unique to him, we know that there are many other families out there facing similar challenges. We want them to know that they are not alone and that there is hope. With the right support, resources, and a strong network, it is possible to overcome the obstacles presented by CMV.