The first time I ever heard of CMV wasn’t in my General Practitioners’ office or my Fertility Specialists office. It wasn’t from a midwife or my private Obstetrician during any of my three pregnancies.
The first time I ever heard of CMV was when an audiologist asked my husband and I if we wanted to test our son William for CMV. This was after he was diagnosed with moderate to severe hearing loss at three weeks of age. We were devastated at the time, but little did we know how much we would soon wish that hearing loss was all William was going to have to deal with.
Confirmation that William was infected with CMV during pregnancy didn’t come until he had a CT scan when he was about three months old. I can clearly remember the faint look of surprise as the Doctor looked over the results and explained that the scan revealed calcification deposits on William’s brain – one of the symptoms of congenital CMV infection.
By default, this meant that Emmaline, William’s twin sister, most likely had also been infected with CMV during pregnancy. Thankfully, she had no symptoms of infection at birth. But, we have had to closely monitor her ever since, as she was still at risk of being one of the 10% of children who develop hearing loss later in life.
Nearly 2,000 children are born with cytomegalovirus infection each year in Australia, leaving approximately 500 children with permanent disabilities, including hearing loss, vision loss, intellectual disability, and in some cases death. That’s 1-2 babies born with disabilities due to CMV every single day in Australia alone. In fact, it’s more prevalent than the overall total number of children born with spina bifida, toxoplasmosis and Down syndrome.