Clinicians and parents come together to raise awareness of leading cause of hearing differences in children

Congenital cytomegalovirus (CMV) is the most common non-genetic cause of hearing differences in children, and it can also be linked to developmental challenges.

Research shows that approximately 1 in every 200 babies are born with CMV after the virus is passed from parent to baby during pregnancy, and yet public awareness remains very low. Screening and access to care can vary widely depending on where in the world a baby is born.

This month is CMV Awareness Month and as a part of our long-standing commitment to whānau who have children affected by congenital CMV, The Hearing House is partnering with the University of Auckland to present the biannual CMV Aotearoa Interest Group Forum on Friday, 26 June from 12-1pm.

The online event will bring together clinicians and therapists, midwives, educators and researchers from various sectors, as well as families from all over Aotearoa and Australia to share their clinical, educational and lived experiences with CMV. 

Speakers include CMV awareness advocate Sarah Percy, whose daughter Camden has single-sided deafness. Hearing differences weren’t detected at her newborn hearing screening, but she developed a progressive hearing loss in one ear, as is known to happen with the congenital CMV infection.

Six-year-old Camden received her cochlear implant two years ago, and Sarah has documented her family’s experiences and personal insights on her website Robot Ear Journey as a way of raising awareness and providing practical help to other families affected by congenital CMV.

Sarah Percy with her six-year-old daughter Camden Logan and husband Jesse Logan.

Other speakers at the online forum include Dr Corrie Roehm, an ENT surgeon from the US who recently joined Counties Manukau, part of Health New Zealand Te Whatu Ora. Corrie has worked with families and children impacted by CMV for many years and developed support programmes in Texas where she practiced as a cochlear implant surgeon.

Also on the forum is Anna Mackey, Project and Relationship Manager for the NZ Cerebral Palsy Register.  The congenital CMV infection can also lead to Cerebral Palsy in children.

Anna will share information around the purpose and scope of the Cerebral Palsy Register, established as the source of accurate, consistent, relevant, and high-quality health information on Cerebral Palsy. 

Presentations and discussions will highlight key areas for research and action into congenital CMV in New Zealand, including improving awareness and prevention, and screening strategies for early identification. 

The Hearing House supports ongoing efforts to raise awareness, improve early detection and ensure whānau have access to the care they need, hosting regular clinics for parents and family members of children with CMV. The clinics are designed to help whānau who are navigating a new diagnosis, seeking information and searching for stories of what others have been through.

You can join the forum via this link https://auckland.zoom.us/j/94078146988 from 12-1pm on Friday, 26 June. Registration is not required.

Recordings of previous forums are available at the recently published CMV Aotearoa hub hosted on the Eisdell Moore Centre website. Through excellence in research, community education and the promotion of quality and equitable services, the Eisdell Moore Centre aims to minimise impacts of hearing and balance disorders across New Zealand and the Pacific region.