To cochlear or not to cochlear, that is the question

Internal view of a cochlear implant

It’s not exactly a Shakespearean proposition, is it? I mean, Hamlet was preoccupied with epic matters like the meaning of life, murder and betrayal. As big decisions go, the gloomy Dane had heavy burdens to grapple with, so our little box of trials can hardly compare.

But the weight of the decision – whether to agree to a cochlear implant, or not, for my four year old daughter – has had me standing in shadowy courtyards talking to ghosts and pondering the slings and arrows of outrageous fortune.

It hasn’t driven me mad (yet) and it’s not an Elizabethan tragedy, but it ain’t no fun-fest either.

It all started late last year with a surprising hearing test result for Amelia. Every check-up since the beginning of 2011 had shown the same level of hearing loss, averaged across both ears: moderate-severe, sloping to profound in the higher frequencies.

At this level of loss – the final frontier before cochlear implant candidacy is considered an option – hearing aids can still work very well to give a child sufficient access to sound; enough so they can learn how to listen and how to speak.

Of course aids cannot close the gap entirely and many sounds detectable to our ears, like birdsong, will mostly elude her forever. But with them, Amelia is able to hear and repeat speech sounds that would not otherwise be accessible to her.

A child will only need a cochlear implant if they have a permanent severe-profound hearing loss and hearing aids are shown to provide little to no benefit at all.

If I have been thankful for anything since Amelia’s deafness was diagnosed, it was that we did not have to go down the road of cochlear implant surgery, with its intensive (re)habilitation and the added visibility of the processor that attaches to the receiver near the back of the head.

We had settled comfortably into life with hearing aids; they had fast become a natural part of our existence. At first it was hard to adjust to their intrusion in our lives, that when I got close to Amelia’s face or brushed against the aids, I would hear the horrible buzz of feedback created by the contact.

But it’s funny how quickly you do adapt and also how fiercely protective you can be of the new space you’re in. For us, hearing aids and a stable level of hearing loss were important threads in the security blanket we’d wrapped around ourselves to weather the change.

It’s no wonder that I did not ever want my baby girl to need a cochlear implant or any other kind of intervention that would cast us into yet another vortex of the unknown.

So, when I took Amelia to her regular check-up in October, 2012 and it showed that her deafness was now testing at profound levels, I felt like the sky was falling. It was a vast, bleak sky and it covered me in darkness. And fear.

I looked at the pen-lines that snaked across the audiogram in front of me, tracking Amelia’s hearing levels across four frequencies. They were steady at first and then jagged downwards sharply like a plane diving into the red zone, from 75 decibels to the depths of 110 (the scale is 0-120, with 0 representing ‘perfect’ hearing).

Not even the mighty Chuck Yeager could have turned this tailspin around, and that guy broke the sound barrier.

The result shocked the audiologists too – I could see it in their troubled eyes. We all just sat there looking at each other, hoping that there was another explanation for the sudden catastrophic change.

Had Amelia been distracted during the test? No, we all agreed she had been unusually calm and engaged, making her responses the most reliable to date. They had been able to capture four frequencies for both ears for the first time ever in one sitting.

I remember feeling so proud of her effort that day, but the result cast a pall over it. There was nothing to rejoice in here.

Perhaps it was some other kind of obstruction in Amelia’s ears? I have never wished so hard for poor ear health. No, they performed the standard tympanometry test and her middle ear function was free and clear. There was no wax or fluid to blame for this alarming result.

We were told that the next step was an immediate referral to the Cochlear Implant Clinic (CIC) for an assessment, particularly for her left ear which had recorded the most dramatic change. Some children are only implanted in the worse ear and wear a hearing aid on the better side.

Amelia’s level of deafness, which until this point had positioned her on the cliff-face between hearing aids and cochlear implant candidacy, now plunged her over the edge into a wholly unfamiliar world. We were definitely not in Kansas anymore.

I remember I had this stupid, polite smile on my face while our audiologists spoke about the assessment program, like they were telling me a story about the weather or the traffic. I would have slapped my own face if I’d been able to see it.

But if I had spoken too much or allowed the dread inside me to leach into my features, I would not have made it through the next five minutes, or the drive home, without totally losing it. And Amelia, as usual so blissfully unaware of the catastrophes befalling her, did not deserve to be confronted by my tears, my pain.

The experience took me back to the ground zero of our original diagnosis day and it felt nearly as horrifying, but I had good company there.

Amelia has grown to love her hearing aids

Amelia has grown to love her hearing aids

I found out later that week that our main audiologist, IS, had carried Amelia’s file around with her for days after the appointment and even took it home at night to try and puzzle out the result. To find some other explanation for it, other than a permanent one. We shared our mutual sadness and disbelief on the phone and I felt a little better.

So what is it that I feared about a cochlear implant? Why was I so resistant (as I still am) to the idea of it? It is indeed a wonderful technological development and has transformed the lives of many deaf children and adults. That is something I would never dispute.

But contrary to popular opinion, it’s not the deaf person’s equivalent of winning the lottery or finding one of Willy Wonka’s golden tickets. We did not hope that our child would one day be ‘lucky’ enough to need a cochlear implant.

Yes, we are fortunate to live at a time when this technology exists and in a part of the world where it is available to us. But finding out that Amelia had apparently lost a significant amount of her remaining hearing could never be a cause for celebration.

Cochlear implant surgery is relatively routine and low risk. But that doesn’t mean that it isn’t invasive and that agreeing to it for your four year old isn’t a gut-wrenching decision.

An incision will be made into your child’s head and part of their skull excavated to accommodate the internal receiver. Once the implant is in, it’s inside them for life.

Cochlear implants are not a ‘cure’ for deafness. When the external processing hardware is removed for sleep or bath time, an implanted child is still deaf, just as Amelia is at night when her hearing aids come off.

And in most cases, implantation will cause ALL of a person’s residual hearing to be destroyed.

Surgery is only part of the story. A cochlear implant turns sound into electric signals, where a hearing aid works to make sound louder. One simulates where the other amplifies.

It takes a lot of programming, effort and long-term commitment to help a child to interpret these electric signals through the implant. It involves learning an entirely new way of hearing.

If we were running out of time to find the right intervention for Amelia, an implant did not promise a quick fix. It guaranteed a much harder path than the one we were already on.

Whatever the circumstances, the benefits, or the urgency, you do not rush into a decision like that.

My husband and I agreed that if the CIC could show beyond any shadow of a doubt that Amelia’s progress and development would not continue to flourish with hearing aids, then we couldn’t in all good conscience deny her a cochlear implant. But we had to know for sure.

The assessment process is long and arduous, as it must be. No-one at the CIC wants to implant a child unless it can be proven that they will benefit from one.

From November 2012 to the end of February this year Amelia endured rigorous testing and re-testing of her hearing and her communication skills – there’s a multitude of appointments to attend with Ear, Nose and Throat specialists, speech pathologists, audiologists and so on.

I have written before about how Amelia finds tests difficult to navigate sometimes, so every appointment presented itself like a stressful obstacle to the completion of the assessment process.

It was an intense and often nerve-wracking program akin to being on a rollercoaster. The initial hearing tests in December and January conducted at the CIC confirmed the poor October results. We resigned ourselves to agreeing to an implant in at least Amelia’s left ear.

She went to hospital for MRI and CT scans to examine her cochlea, auditory nerve and brain, to make sure that implantation would be risk-free and achievable in her case (some children are born without a cochlea or auditory nerve making surgery impossible).

Amelia’s not a massive fan of hospitals or keeping still for doctors, so I had to pin her to my body with the help of two attendants while they put her to sleep, containing the rising sob in my throat as her flailing body slowly gave up the fight.

But it wasn’t all doom and gloom – the rollercoaster transported us up as often as it took us down.

Amelia’s communication tests showed that her speech and language was around a year off the pace, but for a child only aided for two out of her four years on earth, that showed an astonishing rate of development.

And just as we were getting close to hearing the CIC’s final recommendation, Amelia’s hearing tests shifted back to their original levels – to the blessed ‘moderate-severe/profound’. No-one could explain why the previous tests had been so dramatically different. Fluctuations are not uncommon, and for us it didn’t really matter.

These hearing tests along with the MRI/CT scans (which identified no internal problems that might cause further hearing loss) and the positive assessment of Amelia’s communication skills combined to give us a stay of implantation. After months of uncertainty it was a huge relief.

Amelia, relaxed and where I want her to be

Amelia, relaxed and where I want her to be

The final CIC report said that Amelia is not a candidate for a cochlear implant right now, but if in six months her speech and language development has stalled, then we’ll be back in the courtyard wrestling with ghosts and one of the toughest decisions of our lives.

Amelia is only four years old. It doesn’t sit well with me to let doctors take a drill to her head without her permission or knowledge and potentially take something precious from her like the rest of her hearing, unless it is absolutely necessary. Not until all other avenues have been tried, tested and shown to be useless.

I think she deserves at least six months to progress and prove what she has been showing us all along – that she is an amazing little girl with more guts and determination than anyone I’ve ever met.

I know we might yet again have to weigh up the benefits of a cochlear implant, the evidence of which surrounds Amelia every week in her deaf kinder class, but thankfully for now we are free of this particular ‘sea of troubles’, as Hamlet himself might have put it.

Wherever we are headed next, I will put my hopes somewhere safe – with my daughter Amelia – who doesn’t know what a cochlear implant is, but she can tell me she loves me and hear me when I say it back, and that’s all the armour I’ll ever need.

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8 thoughts on “To cochlear or not to cochlear, that is the question

  1. Pingback: My Baby Is Deaf; Sensorineural Deafness - The Good Mother Project

  2. Yes tough decision. Someone recommended I go for implant too but a second opinion thought otherwise. I work as a teacher with Deaf children so I understand the implications and dilemmas surrounding the issue of implants from the perspective of the Deaf person, the parent, educators and medical professionals. I know it has benefitted some Deaf but has failed for others. Good luck. Phoebe

    • Thanks Phoebe, your thoughts on this topic are important – you’re uniquely placed to understand the decision from all sides. I hope we don’t have to think about it again and maybe Amelia will choose one for herself when she is older. Cheers, Melinda

  3. What a roller coaster ride for you all. I know you have the strength to make the most of it, no matter what happens. I must admit that I felt our decision was much easier with Felix being born profoundly deaf. We had nothing to lose and everything to gain. So if you do go there, please call out for support. The path isn’t as hard as it sounds. Surgery is hardest on the family, but the rehab , whilst continual, is just more talk and play. It’s draining but so very rewarding at the same time. Much love and strength
    Jo xxx

    • Jo, it’s always great to hear from you, you are so on the money. I couldn’t agree more – if Amelia had been born profoundly deaf then I know we would have felt differently with, as you say, nothing to lose. I think because we had 2 years of not knowing she was deaf and then 2 years of accepting it and getting used to hearing aids that it all just seems too hard. Throw in the Asperger’s and you can see how the post-surgery stuff might fill me with anxiety. If we do go there later in the year I will definitely call out for support – ADK is an amazing thing, isn’t it? Your words have made me feel better about the idea of CIs than any doctor has so far. Thank you Jo, you are a very special person xxx

  4. Hi Melinda,
    What a relief for you all. what wonderful news for you all and Amelia. She’s just darling in that photo! I am so happy for you all and thank you for sharing again, I truly appreciate your world and family journey…and of course your ray of sunshine Amelia! 🙂

    • Thanks Hebah! Yes, what a relief so far. Here’s hoping that’s the end of it, but I know only too well that getting too comfortable is not a good idea. Your support is so welcome – thanks for being such a loyal and positive follower! Take care, Melinda x

      • my absolute pleasure, how could I not? I am so thankful for your sharing 🙂
        I’ve just read of your victory with the evil swiss ball and I’m so glad you won that battle. I can only imagine how adorable Amelia looks when she acts it out for loved ones to see, must be hard keeping a straight face. well done mama, or should I say Lara Croft?? x

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