Raising awareness of congenital Cytomegalovirus on the local and global stage

Dr. Holly Teagle, The Hearing House’s Clinical Director, is continuing local and global efforts to raise awareness of congenital Cytomegalovirus (cCMV), the most common cause of non-genetic hearing loss in children. She was recently a speaker at the Australasian Newborn Hearing Screening (ANHS) conference in Hobart which showcased best practices in identification and management of children with hearing loss.

Holly is also due to lead a session on Cochlear Implant Intervention and Outcomes for Children with Early Developmental Impairments at the (Re)Habilitation Connect Forum at the American Cochlear Implant Alliance Conference in Dallas, Texas, in June. Children born with CMV often have multiple medical diagnoses, which create many challenges for families. In addition to hearing loss, CMV can also result in developmental delays, cognitive impairment, movement and balance difficulties, visual difficulties and neurocognitive disorders, such as autism and sensory integration problems.

Around 20% of referrals for cochlear implantation at The Hearing House are children who have hearing loss as a result of CMV and over the past three years, The Hearing House has developed and delivered several informational CMV workshops and diagnostic clinics for children, their whānau and local service providers.

The goals of these forums are to provide opportunities for medical and therapy specialists to work together and create a safe and friendly environment for parents and family members of children with CMV to meet and network; to support parents and whānau so they can learn and understand a child’s special needs; to translate findings of evaluations and make recommendations for care in the local community, as well as empower parents and whānau to advocate for their child.

“We’ve been addressing the lack of awareness by increasing the amount of information, resources and support available to Kiwi families,” says Holly.

“Part of this has been the establishment of the CMV Clinic for The Hearing House whānau, which brings family members together with medical and therapy professionals.”

The Hearing House hopes to stage further workshops for children and their whānau over the course of this year.

“CMV is one of the most common infectious causes of birth defects that many people don't know about, and it can be reduced with knowledge of typical hygiene practices during pregnancy,” says Holly, who is an Associate Professor in Population Health at the University of Auckland and has been an audiologist in the cochlear implant sector for many years.

“CMV is a topic of great interest for audiologists because of the strong association it bears to hearing loss in babies.

“As such, it’s an intriguing subject for the University of Auckland’s audiology students who are pursuing their thesis work. This year, two of our graduate students are conducting research projects looking at the incidence and reporting of cCMV in New Zealand, and on the knowledge, perception and management of CMV by audiologists, midwives, and otolaryngologists, who are some of the key healthcare providers for mothers and children with CMV.”

Facts about CMV

• CMV is the most common cause of non-genetic congenital hearing loss. It accounts for

approximately 15%–35% of infants with bilateral moderate-to-profound loss.

• CMV is present in saliva, urine, tears, blood, and mucus, and is carried by 75 percent of healthy infants, toddlers, pre-schoolers, and children who contract the virus from their peers.

• For most people, CMV is a benign virus that is often no worse than mild cold symptoms.

• About 60 percent of women are at risk of contracting CMV during pregnancy but less than 10% have heard about it

• Pregnant women are advised to avoid sharing drinks and cutlery with young children, avoid contact with saliva when kissing a child, and wash their hands for at least 15 seconds after changing nappies, blowing noses, or handling children's toys and dummies.

• Although CMV infection is more commonly occurring than some of the relatively well-recognised conditions, that often have association to congenital impairments at birth, such as Down syndrome, toxoplasmosis, spina bifida or cystic fibrosis, the literature investigating the prevalence, outcomes and specific management of the disease, especially on a country-specific basis, is still significantly lacking - and New Zealand is not an exception.