As told by Ashton Mulligan
The first time I ever heard the term “CMV” was when my son, Reuben, failed his newborn hearing test for the fourth time. A nurse swabbed him and said, “We’ll check for this, but it’s highly unlikely…” The test came back positive.
At the time, it felt like the worst news. We didn’t know how we were going to cope.
The unknowns were the hardest part – Google searches every night while my baby slept, desperately trying to understand what this meant for our future.
Reuben has single-sided hearing loss in his right ear. In the early days, it had a big impact on our family. We were constantly worried about all the other issues that can be associated with CMV. I really struggled to enjoy our baby because I was always analysing him and questioning every milestone.
Early Signs and Diagnosis
The only sign that anything was wrong was Reuben failing his newborn hearing checks. These were done twice initially, then again at our local hospital, and finally at the children’s hospital, where they also swabbed him. We received the diagnosis when he was five weeks old.
Unfortunately, the diagnosis was slower than it should have been. Ideally, treatment should begin before four weeks, but we started at five. This delay only added to our stress.
Living with CMV
At the start, I struggled a lot with depression and anxiety, mainly due to the fear of the unknown. Reuben was also a very sickly baby, and if he was sick after taking his medicine, it would trigger an anxiety episode.
Now, we live what I would describe as a “normal” life.
CMV no longer consumes us in the way it once did. We don’t talk about it every day like we used to.
Support from Family and Friends
Reuben’s diagnosis worried everyone. His grandparents, aunties, and uncles have all been incredibly understanding. They’re aware of his hearing loss and understand that he struggles at times, especially in busy or loud environments.
Our friends have also been amazing. They are always there to listen and support us when we needed it. I remember one particularly tough day when Reuben had been sick after his medication. I was feeling really low and Rory’s mum walked into the house, saw I wasn’t okay, and said, “Get your running kit on and go for a run.” Exercise really helped my mind, and that moment reminded me how important our support system is.
Challenges and Advice
One of the biggest ongoing challenges is explaining to people that Reuben needs to be positioned in a certain way during group settings, so he can hear better. If he can’t hear what’s going on, he’ll often switch off and his mind goes elsewhere. We’re also currently on the waiting list for an ADHD assessment, which could be linked to his CMV.
If I could give advice to another family just starting their CMV journey, it would be: Try not to focus on the “what ifs.” Take each day as it comes. I lost days and special moments with my baby because I was consumed by worry over the unknowns
What I Wish More People Knew
I wish more people understood just how dangerous CMV can be, and how it can affect children in so many different ways. I also wish more people knew how to try and avoid it.
Stronger Together
One of the best things I did was connect with others who’ve been affected. I found people and support groups on Facebook and Instagram, and it really helped just speaking to others who were going through similar experiences.
Looking Ahead
Fast forward six years, and Reuben is doing amazingly. He’s a whirlwind – our Reuben the Hurricane – and we wouldn’t change him for the world.