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Elijah’s story – living with congenital CMV

When Elijah Ririnui was two years old, his grandmother Helene said he loved anything that vibrated.

Lawnmowers, vacuum cleaners, food mixers, power tools, washing machines – all provoked a spontaneous reaction of pure delight. But they weren’t words or squeals of delight -- Elijah had barely made a sound since birth.

It wasn’t until the Ririnui whānau was out boating one day and a passing Jetski got the attention of everyone apart from Elijah, that Helene knew that something wasn’t right.

A visit to a specialist confirmed that Elijah was profoundly deaf, caused by congenital Cytomegalovirus (cCMV) contracted from his mother during pregnancy.

For most people, CMV is a benign virus that is often no worse than mild cold symptoms but the congenital variety is the most common cause of non-genetic hearing loss in children.

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.

A diagnosis of deafness

Helene openly admits that the diagnosis of deafness caused panic among her tight-knit family.

“None of us knew anything about deafness,” she said. “There’s no history of deafness in our family -the deaf world was too different for us to take on board.”

The whānau talked about how they could make him hear – operations, treatment, intervention – until audiologists at Ko Taku Reo in Kelston gently convinced them to accept that Elijah was deaf.

But despite the diagnosis, the family was desperate for him to have a language as a means of communication.

“It was tough his not being able to communicate,” says Helene. “Always climbing up on things, he was a danger to himself.”

Elijah received cochlear implants when he was nearly three, but it wasn’t the miracle cure the family had hoped for. Along with other health issues, he struggled with speech and processing sound and hated wearing the implants, often ripping them off. It became an all-encompassing programme for the whole family.

The one constant throughout Elijah’s journey was the support of The Hearing House, according to Helene.

“They’re a lifeline to Elijah’s progress in terms of his speech – they taught him how to listen,” says Helene. “We couldn’t have done it without them.

“Prior to our journey, we knew nothing about CMV. We had no understanding that the virus was real, and how it could have such a long-term effect on both mothers and babies.

“The Hearing House has connected us with other parents of CI users, helped us understand the virus and removed the negative, accusatory narrative that often comes from lack of knowledge.”

CMV Clinics at The Hearing House

Almost 20% of paediatric referrals for cochlear implantation at The Hearing House are children who have hearing loss as a result of CMV.

Over the past three years, under the tutelage of clinical director Dr Holly Teagle, 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 them so they can learn and understand a child’s special needs; translate findings of evaluations and make recommendations for care in the local community, and empower parents and whānau to advocate for their child.

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

Elijah, who’s now 16, studies online through Te Kura and is a trilingual communicator in English, te reo Māori and NZ Sign Language, thanks to his time working with speech therapists at Ko Taku Reo.

He lives with his grandparents in Papamoa near Mount Manganui, and his younger brother and sister often come to stay. He’s done Riding for the Disabled, learnt to sail through Sailability, and his grandparents have bought him an e-scooter so he can get out and do things.

“It’s been great for his confidence and self-esteem,” says Helene. “Next step is his learners’ licence, and he’s already been out for a little drive.

“I want him to feel that he’s absolutely capable of doing these things, and that he can take on the world.

“CMV shouldn’t be a barrier to that.”

As part of June’s National CMV Awareness Month, the CMV Aotearoa Interest Group held a forum at Auckland University’s Grafton Campus, bringing together clinicians, researchers and families to raise awareness about CMV prevention and management. Dr Holly Teagle, who is also Associate Professor of Audiology at the University of Auckland, moderated the forum and hopes it will inspire ongoing collaboration to improve understanding of CMV in Aotearoa New Zealand so that models for prevention and support can be further developed.


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