Camden’s Robot Ear

Our journey from CMV to a cochlear implant

We had a fairly routine pregnancy. I was fit and healthy for the most part, don’t remember being sick, and took the usual precautions most pregnant women take. Our scans were reassuring, although Camden was on the smaller side, so this was monitored closely. We were induced at 39 weeks because of her size.

When Camden was born, everything appeared normal. She sailed through her newborn checks - she passed her hearing screening, had no respiratory problems, and her newborn heel-prick blood test (the Guthrie test) didn’t raise any concerns.

At that point, there was no indication that there was anything to worry about.

Early health challenges

A couple of years later, we hit a couple of challenges.

In February 2022, Camden was diagnosed with hip dysplasia, which led to major surgery and six weeks in a spica cast. Not long after, she needed her tonsils and adenoids removed. They were so enlarged that she struggled to eat properly and had developed sleep apnoea.

These experiences were challenging, but still, nothing pointed us toward hearing loss.

Discovering hearing loss

In March 2023, Camden saw an ENT specialist in relation to her tonsils and adenoids. Given she had already experienced several health issues, we spoke with the doctor about doing additional tests, just in case something had been missed.

We agreed to a sleep study - and also a hearing test. The hearing test revealed something we were completely unprepared for:
Camden had severe–profound sensorineural hearing loss in her right ear - also known as single-sided deafness (SSD).

The diagnosis came as a huge shock. It brought with it a wave of worry, uncertainty, and questions.

What had caused this?
Could it affect her other ear?
What could we do to help her?

Looking back: the signs we missed

People likely will wonder how we didn’t know sooner.

The truth is, we don’t know when Camden lost her hearing, or whether it happened gradually or suddenly. It could have been from birth, or it could have progressed later in early childhood.

Looking back, there were signs - but they were subtle. Camden often said “huh?” or “what?”, which we assumed was fairly typical toddler behaviour. If we called her from another room, she struggled to locate where we were, even in our small house. She couldn’t localise sound and would often run around until she found us.

She relied heavily on visual cues. She was incredible at search-and-find books and hiding games - likely because she had learned to depend more on her eyes than her hearing.

Like many parents, we felt guilt for not noticing earlier. But we’ve since learned that children are remarkably good at compensating and hearing loss in one ear can be extremely hard to detect.

Discovering CMV

Further investigation (ruling out other factors such as genetics or other illnesses) led us to the likely cause of Camden’s hearing loss: congenital CMV (cytomegalovirus).

CMV is a very common virus. Many people contract it without ever knowing. However, if a woman has an active CMV infection during pregnancy, the virus can pass through the placenta and affect the unborn baby.

Some babies show symptoms at birth. Others, like Camden, appear completely healthy, but develop challenges later.

We requested retrospective testing of Camden’s Guthrie card - blood taken at birth and stored. After weeks of waiting, the results came back positive for CMV.

It’s likely that Camden passed her newborn hearing test because her hearing loss was mild at first and progressed over time.

Congenital CMV (cCMV) is the most common non-genetic cause of sensorineural hearing loss in children and contributes significantly to childhood deafness worldwide. CMV is not routinely tested for at birth in most countries around the world, which means many babies who are affected are never identified early. As a result, the true number of children impacted is unknown, and many families are left without a clear explanation for their child’s hearing loss.

Click here to go to the CMV page for more information.

A confusing path forward

After the diagnosis of single-sided deafness, the pathway forward became unclear.

There didn’t seem to be a standard process for managing SSD. We received conflicting advice from different specialists. Some believed intervention wasn’t necessary because Camden could hear with one ear.

But we worried about her future, particularly knowing that CMV-related hearing loss can be progressive.

While waiting for appointments at Starship, we sought private advice, did extensive research, joined parent support groups, and spoke to other families. It was difficult to find information and know what to do.

Support from The Hearing House

A major turning point came when we discovered The Hearing House in May 2023.

From our first contact, the team was incredibly supportive. They provided clear information, answered our questions, and connected us with other families navigating single-sided deafness.

The Hearing House is a New Zealand charity who support people with cochlear implants through the entire journey - from decision-making and surgery to switch-on, therapy, and long-term follow-up. They are so brilliant at what they do and the service they provide.

What is a cochlear implant?

A cochlear implant is a medical device used for moderate to severe hearing loss. Unlike hearing aids, which amplify sound, a cochlear implant bypasses the damaged parts of the ear and sends electrical signals directly to the auditory nerve.

The implant has two parts:

an internal component, surgically implanted under the skin behind the ear
an external speech processor, worn outside the body, which captures sound and sends it to the internal device via a magnet

The speech processor captures sound, turns it into digital signals, and sends those signals to the internal implant using a magnet. The implant then delivers small electrical signals to the auditory nerve.

Over time, the brain learns to interpret these signals as sound. Hearing through a cochlear implant is different from natural hearing, but it can help people access speech, environmental sounds, and everyday listening in ways that weren’t possible before.

Click here for more information on the Cochlear Implant page

Funding realities and costs

In New Zealand, cochlear implants are publicly funded primarily for people with bilateral severe to profound hearing loss. In some specific cases, such as hearing loss caused by meningitis or injury, funding may also be available.

Because Camden has single-sided deafness, she did not qualify for public funding, and we had known this from early in our research.

The total cost of a cochlear implant in New Zealand ranges from $55,000 to $65,000, depending on factors such as surgery time and the type of implant chosen. The implant device itself can cost up to $30,000. These costs are in NZD and from 2023 - costs may have now changed.

We were fortunate to have medical insurance, which covered the cost of the surgery, which was a huge help but didnt cover the implant itself or the ongoing costs associated with being self-funded. This means we are responsible for future equipment, upgrades, replacements, and accessories.

We are very aware that this cost puts cochlear implants out of reach for many families and this is something we strongly believe should change.

Weighing up the decision

Not everyone with hearing loss is suitable for a cochlear implant, so part of the process was determining whether Camden was even a candidate.

This involved further testing and imaging, including an MRI to check that her inner ear and auditory nerve were suitable. The process took longer than we expected, with delays and follow-ups required, but once it was confirmed she was suitable then it was up to us to make the decision on whether to get a CI or not.

The decision to get a cochlear implant was not quick or easy.

We spent weeks researching, reading academic papers, joining online parent groups, and talking to other families who had faced similar decisions. We heard many different opinions, both for and against cochlear implants for children with single-sided deafness.

Some people felt strongly that because Camden could hear with one ear, intervention wasn’t necessary. Others shared stories of the benefits cochlear implants had brought their children, particularly in noisy environments and at school.

There was no clear right answer, and that was one of the hardest parts.

In the end, we came back to what felt right for Camden, based on her personality, her needs, and the unknowns that CMV brings.

Why we chose a cochlear implant

One of the biggest factors in our decision was CMV itself.

With congenital CMV, there is a real possibility of progressive hearing loss. While Camden’s left ear currently has normal hearing, we don’t know what the future holds. There is no way to predict whether her hearing in that ear will remain stable or deteriorate over time.

Camden’s hearing loss in her right ear was already close to being profound. We also didn’t know when the loss had begun - whether it had been present from birth or had progressed gradually over the years. What we did know was that she struggled to locate sound, particularly if she couldn’t see the person speaking, and that noisy environments were challenging for her.

Getting a single-sided cochlear implant (CI) early for unilateral deafness is crucial to stimulate the auditory nerve before it degenerates and allows the brain to learn sounds from both ears. We wanted to support the development of sound processing in Camden’s right ear while her brain was still young and adaptable.

We hoped this would help her:

better understand speech
cope more easily in noisy environments
develop listening skills that could support her learning at school
and give her the best possible chance of hearing with two ears

Another key part of our decision was choice. By getting a cochlear implant, we weren’t forcing Camden down a single path, we were giving her options. As she grows older, she can choose whether to wear her implant or not. Without an implant, that choice would never exist.

Camden wears a Cochlear™ Nucleus® 8 processor.

Surgery

After making the final decision in November 2023, we enjoyed a few weeks of summer before Camden’s surgery at the end of February 2024. Camden was four years old at the time, and we wanted her to have time to adjust before starting school later that year when she turned five.

The surgery itself took a few hours and required a general anaesthetic and an overnight hospital stay. Some hair was shaved at the incision site, but otherwise the preparation was straightforward.

Camden handled the surgery incredibly well, perhaps helped by the fact that she had already been through other medical procedures earlier in her life. She was reading and drawing from her hospital bed not long after waking up.

She had a bandage around her head to cover the incision site but as she was sleeping on the first night that didnt stay on too well so we ended up taking it off in the morning anyway. She was woken for pain relief and medications every few hours, but she never complained about pain or discomfort.

The hardest part of recovery was keeping her still when all she wanted to do was run, jump on the trampoline, and play. She stayed home from daycare for two weeks and wasn’t allowed to do physical activity for four to six weeks. She needed very little pain relief, and there were no complications with her stitches or wound site. Overall, the recovery was thankfully smooth.

Switch-on day

Switch-on day was 4 March 2024 - the day Camden’s processor was fitted and sound was introduced for the first time. It marks the start of a whole new chapter.

The switch-on took place at The Hearing House, and the team were warm, patient, and supportive, explaining everything clearly and making the experience feel positive rather than overwhelming.

When Camden was asked what it sounded like, she laughed and said:

“It sounds like farts.”

It immediately put everyone at ease and we knew she would embrace her new ear well! This first appointment was about an hour and was just mainly doing little games and testing to make sure it was all working and the sound levels were okay.

We decorated her processor with her first “robot ear” sticker, Anna from Frozen, and Camden wore it proudly, excited to show everyone.

Everyone’s switch on day and experience is going to be different, and while ours was a positive experience, we appreciate that sometimes it can be challenging and daunting going into it. We talked to other families who had been through this prior to the switch on, so that we had an idea of different perspectives and situations that could happen.

The first year with a CI

The days and weeks following switch-on involved regular appointments at The Hearing House.

We returned the very next day for a check-in after her first full day of wearing the processor. After that, we attended weekly appointments for several months, then fortnightly, then monthly, and eventually every few months.

These appointments focused on mapping (adjusting the implant settings), monitoring progress, and supporting Camden’s listening development.

When Camden returned to daycare, she was excited to show her friends her robot ear. Her teachers handled it beautifully, having a group discussion about what it was, what it did, and reminding children not to pull at it.

We made a point of celebrating the implant as something positive and exciting and the children followed our lead. To them, it was interesting for a moment and then quickly became just another part of who Camden is.

Speech therapy and technology

A couple of months after switch-on, Camden began speech therapy. These sessions take place online and stream directly to her cochlear implant.

Her implant can also connect directly to a television or mobile phone, allowing her to listen more clearly during therapy sessions or while watching shows.

Progress was slow at first, with very basic listening tasks. Then, after a few sessions, something seemed to click and her progress accelerated.

She would watch Bluey, Gabby’s Dollhouse and simple songs as homework - which she loved of course! These would stream directly to her CI so she could only hear in her implanted ear. We would wear headphones to listen along too and often stop the show and ask her about what was happening and what people were saying to test what she could hear. When she could answer everything correctly we were blown away and still now it amazes us!

Experiences on how fast kids 'hear' or how much they want to wear their processor each day differs greatlyand some kids will struggle more than others. We were prepared for a battle with getting her to wear it, and for her not to want to do the work required, but for the most part Camden was accepting of all of it. The initial progress was slow and knowing what they hear is also tricky but the perserverance paid off for us.

At school

Camden attends a wonderful school that already has experience supporting children with cochlear implants. This made a huge difference.

She has a dedicated advisor from the Ministry of Education who advocates for her and supports her teachers with strategies and advice when needed.

In the classroom, her teachers wear a Roger microphone, which connects directly to Camden’s cochlear implant. This allows her to hear her teacher’s voice more clearly, even in a noisy classroom, and reduces the risk of missing key information.

These supports help ensure Camden can participate fully and confidently in learning.

Celebrating robot ear life

To celebrate one year of life with her cochlear implant, we held a Robot Ear Party at our local park.

There were themed cupcakes, a “pin the CI on Camden” game, and pass-the-parcel with a Lego figure that had a cochlear implant of its own. We have always tried to have fun with her robot ear and make it a positive experience and this was a great way to celebrate the one year milestone and how far she had come.

Challenges

While most days run smoothly, there are still challenges.

Physical activity:
Camden loves running, trampolining, swimming, and gymnastics. During active play, the processor can fall off. Sometimes a headband helps, but for some activities she chooses to take it off. We know she hears less well during those times, but she manages.

She has also been discouraged from contact sports due to the risk of damaging the internal implant.

Fatigue:
Listening through a cochlear implant takes effort. The brain works harder to interpret sound, and fatigue can build up. Camden often pushes through until she suddenly crashes, so we try to be mindful of signs of tiredness before it reaches that point.

Noisy environments:
Busy places like restaurants, playgrounds, or loud classrooms can still be challenging. And we try to make sure we are close and facing her when talking, rather than yelling across a room.

Sound localisation:
Camden still struggles to tell where sounds are coming from. If she hears us but can’t see us, she may not know which direction we are. This is something we continue to work on and support her with.

What we wish for other families

We know we are lucky. Camden’s CMV did not cause more severe challenges. Her hearing loss is in one ear. She is resilient, confident, and supported by a strong network. We had some insurance coverage to help with costs and we were able to advocate for her.

But the journey to this point was still a challenge and we’d like this to be easier for other families and there could be a better way to support people who find themselves on this journey.

Based on our experience, we hope to see:

CMV included in the newborn Guthrie test, so families have information early and don’t need to rely on retrospective testing
Public funding for cochlear implants for children with single-sided deafness, so families have real choice
Clearer, more consistent pathways following an SSD diagnosis, and better education for medical professionals about all available options

By sharing Camden’s story, we hope to support families who are just beginning this journey and to help create change for those who follow.