Emmaline & William's story: Congenital CMV
A Sydney mother of four is working to raise awareness in Australia of a common virus that can cause birth defects and developmental disabilities.
Kate Daly, a mother of four children including a set of twins born with congenital cytomegalovirus (CMV) in 2010, wants to help educate pregnant women and physicians about the dangers of CMV and how they can minimize their exposure to it during pregnancy to keep both mother and baby healthy.
“After my son, William was diagnosed at 3 weeks of age with permanent hearing loss caused by CMV I was shocked to find out that there was something I could have done to try and prevent it & I hadn’t been told,” says Daly. “I would like to see pregnant women be informed of CMV and advised to practice basic hygiene if it can help keep babies alive and healthy.” Daly contracted the virus while pregnant with her twins, William and Emmaline who are now 12 months old. While Emmaline so far has been extremely fortunate with the virus only seeming to cause her a mild developmental delay William was affected more significantly with a much more substantial global developmental delay and profound deafness.
On the 8th December 2011 William is scheduled to have surgery and be implanted with Bilateral Cochlear Implants. His mother is looking forward to the best Christmas present she could ever dream of with William’s CI’s being switched on just in time to hear the carols on Christmas day. Daly is working to start a non-profit organization, Congenital CMV Association Australia (CCMV Australia), to launch grassroots awareness and advocacy initiatives in Australia.
A 2010 study through the Australian Paediatric Surveillance Unit (APSU) reported that approximately one in every 160 children is born with congenital CMV. CMV is the most common congenital (meaning present at birth) infection in Australia and is the most common cause of birth defects and disabilities, including deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death. Each year in Australia, nearly 1,800 children are born infected with CMV. “More babies are born with congenital CMV than any other infection in pregnancy in Australia,” says Professor William Rawlinson, Senior Medical Virologist at SEALS Virology, Prince of Wales Hospital. "We need greater recognition of the problems associated with cytomegalovirus if we are going to make any progress.”
Screening for CMV infection in pregnant women and newborns is not routine and many newborns that go undiagnosed with the virus may go on to develop hearing loss and developmental disabilities. Professionals recommend basic patient counselling regarding prevention measures to guard against CMV infection during pregnancy, including frequent hand washing, not kissing of young children on the mouth and not sharing food, towels, or utensils. “We know from previous studies that when pregnant women realise they are at risk of infection, they modify their behaviour and reduce their risk of acquisition by about half," says Rawlinson.
CMV is a common virus, present in saliva, urine, tears, blood, and mucus, and is carried by healthy infants, toddlers, preschoolers, and children who contract the virus from their peers. About 60 percent of women are at risk for contracting CMV during pregnancy, posing a major risk to mothers, daycare workers, and preschool teachers. Although the virus is not harmful to most people who carry it, pregnant women who contract CMV have a risk of passing it on to their developing baby who are then at risk for infection and subsequent disabilities. “Women are largely unaware of CMV until their child is born with congenital CMV. We need to address this,” says Cheryl Jones, Paediatric Infectious Diseases specialist at the Children’s Hospital, and Professor of Paediatrics at the University of Sydney.
