CMV has left four-year-old daughter Charlie facing a future without her hearing.
Charlie’s Mum Lindsey had never heard of CMV during either of her pregnancies, yet she contracted the common virus which has caused her little girl to battle severe deafness. Although never actually being diagnosed at birth, Charlie was a small birth weight and born with purple spots on her body known as petechiae. Both are obvious signs of a CMV infection.
Charlie failed her newborn hearing test and it was confirmed she had unilateral deafness. Charlie was a poorly baby, having lots of urine infections and reflux. Despite these warning signs of a CMV infection, it was only when she was hospitalised with pneumonia for the second time, at the age of one, that congenital CMV was confirmed.
Her motor skills were delayed, she didn’t walk until nearly 2 and also was delayed in talking.
When Charlie reached 3yrs old, her hearing in her right ear also deteriorated.
This was utterly devastating as we weren’t prepared for any other changes.
While we knew Charlie had one-sided deafness from birth, we had no idea it would get worse and worse. As parents, it took time to deal with the impact of CMV on Charlie, but it was even harder for her older brother – he told us that he was very sad that Charlie was going to deaf.
She manages very well, proudly wearing a glittery pink hearing aid she picked herself with a Peppa Pig attachment. Charlie attends a mainstream primary school and she is a bright young girl despite everything she has been through.
Charlie will eventually lose her hearing completely but can be fitted with a cochlear implant — a small electronic device — before she is eight.
It is a constant battle with very few answers.
We still have no idea how I contracted the virus and at what point in my pregnancy it was passed on to Charlie.
I want expectant mums to know how to protect themselves and to be aware of the symptoms. I wasn’t given any information about the threat CMV posed during either of my pregnancies. This must change.
There desperately needs to be more awareness. It is all about educating people.
The only information I have is from research I have done myself or through the charity CMV Action.
It was just never flagged up as something I needed to be worried about.
Despite the challenges she tackles, she remains very determined and although CMV has had a devastating long term impact I wouldn’t change her for the world.
“Every day she amazes me so much.”