Before this experience, I was a teacher. I loved it, and I had a career mapped out. I was on leave at home with my first baby, fully expecting to go back to the classroom, when I found out I was pregnant again.
I was eight to ten weeks along when my twelve-month-old came down with something. I caught it from him, the way mums catch everything. I had a low-grade fever and chills, spent a day resting, and then carried on looking after my toddler. There were no alarm bells and no hospital visit. The pregnancy felt like it was unfolding the way it should.
The virus was CMV. I had never heard of it, and it wasn’t mentioned at any of my pregnancy appointments. It is very common, young children often carry it, and most adults who catch it barely notice. I certainly didn’t.
My son was born looking healthy, and we had no reason to suspect anything was wrong. Then his newborn hearing screen raised concerns. At three months an audiologist found a mild loss in the high frequencies. We were told he would talk and might need some speech therapy.
Because of the CMV, we kept going back to have his hearing monitored. By nine months it had declined enough that he was fitted with hearing aids. He didn’t walk until twenty months, and despite all the speech therapy there was no babbling and there were no words. Again and again we were told he was difficult to test and that they couldn’t get a clear result. I had to push hard to get more testing done.
When he was two, the seizures started. We were living remotely, and the Royal Flying Doctor Service flew us out of our home town. He was diagnosed with epilepsy and started on anti-seizure medication. Over time we came to understand that the virus had affected his brain as well as his hearing.
Following that, he had a sedated ABR under general anaesthetic. An audiologist told me the result in a hospital corridor. He was profoundly deaf, and he was put on the waiting list for cochlear implants.
He received a cochlear implant on his left side, and two years later one on his right. There were countless mapping sessions and speech therapy appointments, and each time I hoped this would be the thing that moved him forward. The implants haven’t given him what we hoped for. So we leaned on the language we had started learning as a family, Auslan, and five years on we are still having lessons with Deaf mentors.
That is the thing about congenital CMV. It was never one diagnosis on one day. It revealed itself slowly, piece by piece, over years.
For a long time I blamed myself. I replayed that day in bed over and over, trying to find the moment where I should have known better. People told me it was just bad luck, which is hard to hear when you live with the consequences every day.
Counselling helped me understand more about that guilt I was experiencing. When an event happens in life without an explanation, the mind goes looking for a cause, and mothers almost always choose themselves. With what I knew then, there was nothing I could have done differently. It took me a long time to believe that.
I’ve made peace with this part of our story now. It still matters, but I understand it, and I have put down a responsibility that was never mine to carry.
What I didn’t see coming was what those years would do to the rest of my life, and to the driven teacher who thought she knew exactly where she was heading.
There’s more to this story than one article can hold. The next part is about the year I had to choose between the career I’d built and the life we were actually living, and how that changed the way I see my own life.
Hi, I’m Trudy
I’m a former teacher and a medical mum, and I’m building my next chapter. I write honest stories about life changing the plan, ageing well and building an online business around real life.
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