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.
Yet, multiple international research studies report that between 61 and 87 percent of pregnant women have not heard of cytomegalovirus (CMV).
On feeling completely alone and isolated with my new reality, I soon learnt that there was no support group or go-to organisation in Australia for families affected by congenital CMV that I could turn to.
After William’s diagnosis, I was also disturbed to find out that I could have reduced my risk of contracting CMV significantly, possibly even by 50% if I had applied a few very simple strategies while I was pregnant. Yet, I had not been told about CMV or how to reduce my risk of contracting CMV during any of my three pregnancies.
But, hopefully, this will soon no longer be the case for other pregnant women.
Listen to Hello Bump: Mamamia's pregnancy podcast, with Monique Bowley and Rebecca Judd. Post continues after audio.
In 2015, I was honoured to be part of an international group of congenital CMV medical experts and community advocates to put together a consensus recommendations report based on published highquality scientific research. Such recommendations are a valuable tool for healthcare providers to make the best decision for their patients’ health care.
Excitingly, one of the most prestigious medical journals in the world – the Lancet Infectious Diseases published these recommendations in March this year.
Two of the most important recommendations of this publication are that “health-care providers, including midwives, obstetricians, and paediatricians, should be educated about congenital cytomegalovirus infection and preventive measures.
Given the potential risk of congenital cytomegalovirus in all pregnancies, all pregnant women should be educated about congenital cytomegalovirus infections and preventative measures.” These scientifically backed preventive measures include not sharing food, drinks or utensils with young children and not putting a child’s dummy/soother/pacifier in your mouth. They also include avoiding contact with saliva when kissing a child plus thoroughly washing your hands with soap and water after changing nappies (diapers) and after wiping a child’s nose or drool.
With these recommendations in mind, the Congenital CMV Association Australia has produced a Protect your Baby from CMV during pregnancy poster and information leaflet, including these preventive measures. I look forward to hopefully seeing them soon in every waiting room around the country.
As for the twins. Emmaline is now in year one. She goes to a mainstream school with her two older sisters. She was never officially included in the statistics as having congenital CMV and, although comparatively very lucky, we found out last year that she has a significant learning disability involving her working memory. She is receiving therapy to support her.
William is now a tenaciously endearing six-year-old, who is in year one at a beautiful special needs school called St Lucy’s. He is profoundly deaf with mild cerebral palsy, dyspraxia (a motor planning disability) and a moderate global developmental delay, which means, to put into context, he has the approximate developmental age of a 3-year-old. Despite six years of going to audio-verbal and speech therapy every single week, he is still considered to be non-verbal. More recently, I realised that we might need to accept that William might never be able to have a conversation with his peers, as I’m sure he would love to. But, that doesn’t mean that either of us will ever give up trying.
Sadly, another 12,000 babies were born with congenital CMV in Australia since William and Emmaline were born. Three thousand of these children suffer from significant disabilities, and some of them have tragically died. The consensus recommendations published by the Lancet Infectious Diseases means there can no longer be any more excuses or delays. Stopping CMV is now a real possibility. We can't change the past, but we can help other parents by giving them an opportunity to protect their babies.
Thus, the time to inform pregnant women about how to protect their babies from CMV is now.
In January 2012, Kate Daly founded and registered Congenital CMV Australia as an Association with the Department of Fair Trading. This association, now known as the Congenital CMV Association Australia (CCAA), supports and empowers families who have been affected by congenital CMV. It also collaborates with and facilitates Australian research programs, and help to prevent CMV by raising awareness through public education initiatives. The CCAA has now also been registered as a charity with the Australian Charities and Not-for-profits Commission as a Health Promotion Charity with Deductible Gift Recipient Status.
Featured image via Jacqueline Floyd from Digital Flashbacks Photography.
You can find out more about cytomegalovirus here.