As told by Nicole
When I First Heard About CMV
I had vaguely heard of CMV through my work as an early childhood educator, but it wasn’t until my second son was 11 weeks old and diagnosed with congenital CMV (cCMV) that I truly understood what it was and how deeply it could affect a family.
Our Diagnosis
Our journey began when my son was diagnosed with profound bilateral sensorineural hearing loss at just 3 weeks old. Then, at 11 weeks, we received the cCMV diagnosis. That moment was incredibly hard. There was so much guilt—I had passed this virus onto my baby without knowing. On top of the guilt was fear: what would his future look like?
How CMV Has Affected Our Daily Life
CMV has had a huge impact on our everyday lives – emotionally, physically, and logistically.
Emotionally, it’s changed who I am. Raising any child is all-consuming, but raising a child with a disability adds another layer that sits at the centre of everything I do. Physically, I feel on edge when we’re around pregnant people, because even a year later, my son is still shedding the virus.
The Impact on Family
It’s been a learning curve for our entire family. We’re learning sign language together, which has been a gift, but it also comes with challenges. It’s affected by ability to feel comfortable leaving him with family as he has vestibular hypofunction, hypotonia, and a gross motor delay as well. My eldest son has been there through it all and has attended 90% of his brother’s medical and therapy appointments. Balancing everyone’s needs, while not letting his diagnosis take over everything, is a constant challenge and can really take a toll on my mental health.
The Power of Community
Our friends and community have played a big role in helping us cope. I’ve found a few amazing support communities made up of people on similar journeys, and those connections have been everything. One place where I truly feel the Stronger Together theme come to life is in the bilingual community I’ve joined. We meet online regularly and after each time, I leave feeling so supported and understood. I’m also part of a beautiful group of physio mums – we connect both in person and online, and even though our kids have different needs, we’re able to really resonate and support each other. I’ve made a lovely friend whose son is the same age as mine and was also born with CMV. We chat online regularly and having someone who truly gets it has been so helpful.
Our Biggest Challenges
Some of the biggest challenges have been guilt and worry. I haven’t completely overcome them, but I’m getting better at managing. I try to focus on what I can control, I reach out to my support network, speak with my psychologist, or talk things through with our early intervention team. But one of the most powerful ways I cope is simply spending time with my boys – delighting in them, enjoying them, and remembering to see my son as a whole person, not just his diagnosis.
Advice for New Families on the CMV Journey
To families just starting their CMV journey I would say – connect with people who have lived experience. Everyone’s path is different, but there are others in similar stages and situations who can offer insight and comfort. Knowledge is power, and early intervention is so important. Trust yourself. You know your child best, and your instincts are valid.
What I Wish More People Knew About CMV
What I wish more people understood about CMV is that it’s not “just a cold.” It can be shed for a long time afterwards. It’s spread in all bodily fluids – not just urine and faeces. Pregnant women trying to protect themselves and their babies aren’t being dramatic or difficult. They’re doing what they need to do.
A Message to Others on This Path
To other parents going through something similar: you are doing a fantastic job. This is hard. And your child is so lucky to have you.