“Your perfect Deaf child will thrive” - Lucia’s hearing journey

At just 11 months old, Lucia has already been on an extraordinary journey. She lives in Birkenhead, Auckland, with her mum Chelsea, dad Michael, and big sister Daisy, who is four years old. The rest of the family are hearing, but Lucia was born profoundly deaf.

Lucia’s hearing difference was first identified through the newborn hearing screening programme when she was just two days old. Both ears did not meet the typical hearing threshold, and she was referred to an audiologist at Greenlane Hospital for an Auditory Brainstem Response (ABR) test. By the time the appointment came around, she was six weeks old.

The ABR confirmed that Lucia had profound bilateral sensorineural deafness. While the news was significant, Chelsea and Michael had been gently preparing themselves for this possibility. They decided to test for both genetic and viral causes, including cytomegalovirus (CMV), to understand whether Lucia might face any additional health considerations, such as changes in vision.

The results showed no signs of CMV or other conditions, but revealed something unexpected — both parents carry a rare recessive mutation in the TRIOBP gene, which results in a profound hearing difference. TRIOBP-related deafness accounts for less than one percent of all cases globally, making Lucia’s situation extremely rare.

Several repeat audiology tests and a trial of hearing aids followed, along with an MRI to determine whether Lucia had the right anatomy to benefit from cochlear implants. At four months old, she slept soundly through the scan, and the results were encouraging — her auditory nerve and cochlea looked perfectly normal. At six months, she underwent bilateral cochlear implant surgery, performed by Dr Colin Brown.

The experience has been both challenging and inspiring for the family. In the early days, Chelsea and Michael grieved the idea of hearing for their daughter. But in time, they realised it wasn’t a loss for her at all.

“Lucia will grow up with access to language in both spoken English and New Zealand Sign Language (NZSL), which is a pretty cool thing,” says Chelsea. “She will have choice around how she communicates.”

Support has come from many corners — First Signs, Deaf Aotearoa, and Auckland Parents of Deaf Children have all played important roles. Learning NZSL as a family has been a joyful and empowering step, and Deaf playgroups hosted by Deaf Aotearoa at The Hearing House have provided a sense of belonging and community.

Chelsea says that The Hearing House has been a constant guide and advocate throughout the process, from the moment of diagnosis through trial hearing aids, surgery, switch-on, and regular follow-up appointments.

“Cochlear implants are life-changing technology, but the role The Hearing House plays is equally life-changing,” Chelsea says. “We know we can call them anytime with any question and be met with warmth, reassurance, and expert guidance.”

Through The Hearing House, the family has also built a strong connection with Deaf Aotearoa — a link they value deeply. Chelsea’s advice to other parents is simple: “Work alongside the amazing team at The Hearing House and embrace the Deaf community.

“Your perfect Deaf child will thrive.”

Lucia's family already had a connection to The Hearing House before she was born — her grandfather, Paul Cook, served on its Advisory Board for 17 years, including a significant term as Chair.

"It’s a complete coincidence that Lucia was born into a family so closely tied to this incredible organisation, and it came as a huge surprise to all of us," says Chelsea. "It’s incredible to think that in Paul’s 17 years of service, the outcomes of his contributions are now directly benefiting his own granddaughter — a connection none of us could have imagined. This special connection makes Lucia’s relationship with The Hearing House all the more meaningful."

Lucia is still too young to express how she feels about her cochlear implants, but her parents have noticed one thing — she loves the sound of her own voice. When her CIs are on, she squeals and babbles with delight; when they’re off, she’s noticeably quieter.

“We keep her processors on for as much of the day as possible to encourage those joyful squeals,” says Chelsea.

Outside of her hearing journey, Lucia is a happy, curious baby. She adores the family dog, George, following him around the house and occasionally trying to climb onto his back. She loves hugging her stuffed animals and watching sister Daisy jump, run, and play. Her world is full of movement, laughter, and connection — and her family is determined to make sure it stays that way.

11-month-old Lucia