An article originally commissioned by CICS, the cochlear implant support group, for their newsletter. Oliver was for some years a chorister at HPC and his family regular members of the congregation.
We do NOT deserve this. That was my first thought when I discovered that our baby was deaf. Not that anyone deserves to have a child born with a disability. But my own personal sense of injustice was fuelled by the fact that my wife, Becky, and I had already gone through so much heartbreak in order to have a child: four miscarriages and an ectopic pregnancy that required surgical intervention. So I stupidly assumed that we’d more than exhausted our quota of bad luck. Weren’t we, of all people, entitled to be blessed with a normal, healthy baby?
When our daughter ‘Hope’ arrived in September 2010, it seemed like that our wish had been granted. Sure, she failed the newborn hearing test, but we’d been warned that – as infants’ ears are so full of gunk (I think the technical term is ‘Vernix’) – a negative result is not uncommon, and no immediate cause for alarm.
Four weeks later, Hope was rescreened at the Nuffield Speech & Language Centre. When the audiologist told us the results, for a moment it was my own hearing I questioned: it sounded like we had just been told that our little girl was profoundly deaf! That couldn’t be right… right? And then I picked up something about her being measured for hearing aids, but that it was unlikely that this would allow Hope to access conversational speech, given the severity of her hearing loss. Hang on, what? I simply couldn’t process this. But then finally it was explained in a way that I could comprehend: if a jumbo jet landed right beside Hope, the chances are that she wouldn’t even bat an eyelid.
The next thing I remember was trying to hail a cab in Kings Cross’s Friday afternoon rush hour, standing silent, shell-shocked and soaking in the pouring rain, clutching an assortment of NHS advisory pamphlets, trying to hold it together until we could get home. I broke down on our doorstep. It’s a cliché but, truly, it felt like the world was ending. I cried pretty much non-stop for a week. I bawled down the phone to every name in my address book; collapsed into the arms of every neighbour. I didn’t want to do anything other than sleep – a means of fleeing this nightmare. But an infant only allows short bursts of escape. So every two hours she awoke – and every two hours I did too, only to face that moment of painful recall, over and over again. It was utter torture. And for those few days, I’m ashamed to admit that, every time I looked at Hope’s face, I no longer saw a blessing, but a curse.
It was time to stop wallowing in self-pity. I had to let go of the future I had envisaged – and was now grieving for – and embrace the new reality. It was time to get up. To read up. And to man up. The first step was to discover the cause of the hearing loss. An analysis of our DNA revealed that my wife and I both carry the same recessive gene, Connexin 26. As a result of us both giving our faulty gene to Hope, she had been born with none of the thousands of hairs that most of us have in our inner ear, which allow us to process sound. On the plus side, we were assured that deafness was the only complication that Connexin 26 caused. This seemed scant consolation – until Hope’s situation was put into context on our first visit to Great Ormond Street Hospital. There we saw many children attending the audiology unit for whom deafness is only one of many challenges they’re facing.
The next step was to determine exactly what Hope’s future might hold. In the simplest terms, we were faced with a massive choice: accept that Hope was unable to hear and raise her as a deaf child, or pursue a radical alternative: cochlear implants. The former guaranteed Hope some tried and trusted means for communication: signing and lip-reading. And it also offered her a place within a network of incredibly kind, welcoming, sympathetic and vastly experienced people: the deaf community. Whereas the latter would involve permitting someone to drill into both sides of Hope’s skull, perform major surgery just milimetres away from her facial nerve, and implant a series of electrodes. An operation that would leave her ever dependent on technology, always reliant on battery, and forever part-human, part-machine.
It seemed like a no-brainer. But we went with the cyborg option. Why? Because we wanted Hope to be part of the hearing world. If modern science meant that there was a chance that she might access sound and speech, who were we to deny her? So, in 2011, on July 4th -“Independence from Silence Day” as it became known, 8 month-old Hope became one of the youngest babies to undergo bilateral cochlear implant surgery. The operation was a success. She was now the proud owner of a pair of Nucleus 5s.
We waited the long and agonizing fortnight for her processors to be activated. The specialists are obliged to manage people’s expectations – and rightly so – but I had already met some of cochlear implants’s success stories: a four year-old girl who responded to sound and communicated like any other four year-old girl; an eight year-old boy who was head of his class and clearly destined for great things; and a twenty year-old University graduate – whose boyfriend confided that he’d only realized she was deaf three months into the relationship – when intimacy had finally led him to notice the discreet device nestling behind her ear. So yes, I dared to dream, once again, that we might get our happy ending. And yes, finally we did. Hope’s results have been nothing short of spectacular. Within days of her switch on, she was responding to a door slamming, our dogs barking and – most thrillingly of all – her parents talking! It seemed like things couldn’t get any better. Then they did. We had been advised that some implantees find it difficult to enjoy music. Yet it wasn’t long before Hope was dancing and singing along to her favourite sounds: “Maggie May” by Rod Stewart, “Rolling in the Deep” by Adele and “Ping!” by our microwave.
And the good news just kept on coming. By the time she was 14 months old, her communication skills were judged as “age appropriate”. In other words, her hearing and speech was comparable with that of a normal child. There is now no reason why her upbringing, schooling and life choices should be any different to those of her peers. And here’s the icing on the cake: while most children’s hearing will deteriorate as age takes its toll, Hope’s will only improve as further software updates and hardware upgrades become available. While her Dad’s ears get furrier and fuzzier, hers will only get sleeker and clearer. Mine are scrapheap-bound while Hope’s are future-proof.
There must be some downsides, you’re thinking. But I struggle to come up with any. The recharging and maintenance of an implant is no more demanding than that of an iPod or iPad. The processors are not worn in the water, but that doesn’t stop bathtimes being a noisy affair of chatter, giggles and – when I wash her hair – objection. It also means that she can’t hear when she swims – only likely to be a concern if Daddy is shouting “Shark!”. She also sleeps without the processors – again, only problematic if Daddy has cause to shout “Fire!”.
And what of the stigma attached to the wearing of such devices? Again, I see precious little. Maybe that is because wherever one looks nowadays, one sees people sporting bluetooth headsets and bass-boost headphones that are far more cumbersome and crude equipment than Hope’s? Maybe it’s because people with implants aren’t ashamed of them: they don’t hide ‘em. Hell no, they pimp ‘em! (The processors wouldn’t be available in glitter-pink and leopard-print unless there was a demand, one reasons). Perhaps it’s also down to the fact that we live in an age where our absolute dependence on technology is accepted as the norm. This would explain why kids wearing implants are greeted with wonder and amazement in the playground, rather than teasing and bullying. To the younger generation, the fact that wearers are able to plug themselves directly into a USB port isn’t grounds for ridicule, but “Really cool!”
As you may have gathered, I don’t have a bad word to say about Hope’s processors or, as they are known in our household, her “Magic Ears”. What I do have to say is how much I am indebted to so many: William House, the clever Australian doctor who invented the multi-electrode cochlear implant half a century ago; the Cochlear organisation for refining that technology, our brilliant ENT surgeon Ben Hartley; Dr. Kaukab Rajput and her amazing team at GOSH; several skilled audio-verbal therapists called Catherine; one damn fine health service provider called the NHS (I will never say a bad word about it again!); the great support and wise counsel of CICS’ very own Tricia Kemp; and I cannot go without mentioning my amazingly supportive family and the endless courage and fortitude of my loving wife – Hope’s adoring mother – Becky. Collectively it was these people’s efforts that have allowed a miracle to take place: my daughter was born deaf (and she still is, technically) but she can now not only hear, but also talk, just fine. This incredible journey has served to teach me a valuable lesson about parenthood: it’s no longer about what I deserve, but about what Hope deserves. And, thanks to cochlear implants, she is getting what she deserves: the opportunity to live life to its fullest.
Holding onto Hope
Oliver Dennis