The bumps in the road
Despite both her implants showing internal faults, Onna’s functional hearing has been the best ever recently . These is her audiogram from April 2020. Look at those beautiful straight lines!
Onna with her Dad, just after she had woken up following her first bilateral cochlear implant surgery in 2016.
No-one ever said that navigating the hearing loss journey alongside your deaf child was going to be plain sailing. And it’s true. It’s hard. It’s exhausting. It’s frightening at times. But then, it’s also equally joyous and rewarding and often simply incredible! The truth is, no matter how many bumps in the road you encounter (some families unfortunately encounter many more than others), you pretty much know there will be another one coming at some stage. When it comes, each bump has the power to punch you in the gut, completely knocking the wind out of your sails.
We have known for some time that our six-year-old daughter Onna’s cochlear implants are among a “watch list” batch following a global recall due to a design fault, which is causing a slow-burn deterioration in the quality of sound accessed through the implants, starting with the high frequencies. For at least two years now, our audiologist has been monitoring some abnormal internal readings on Onna’s left implant, and has been expertly programming around these anomalies, switching off some high frequency electrodes and boosting the stimulation levels. It came as a bit of a shock when, just recently, the internal readings on the right (which has always been Onna’s best side) also started going haywire. And this when Onna was posting her best audiology results ever, with excellent functional “hearing” on both sides - how far we have come since her audiogram wallowed down the bottom in the severe-profound hearing loss range! But as I said above, beware of the next bump…
I consider myself a fairly calm parent most of the time (barring when dealing with my twins’ untidiness – I’m not a particularly tidy person myself but their bedroom takes it to another level completely!) My mantra goes something like this: “Face what you’ve got to face and get on with it.” When our twins were born prematurely at 28 weeks, their father Ian and I just did what needed to be done, as calmly and as best we could during a time of high emotion in a brand new unexpected world (looking back now at photos of that time makes me feel far more anxious in a retrospective sense, than I felt then when I was engulfed by the situation, 100% focused on staying strong for my tiny babies.) Three years later when Onna was (eventually after a few missteps – more about that in another post) diagnosed with severe-profound hearing loss and ANSD, and then had to undergo bilateral cochlear implant surgery, Ian and I were anxious – of course we were – but nonetheless we were also calm and focused. Her diagnosis was a call to action for us, not a time to look back and consider “what ifs”. There were no tears, no panic, just pragmatism. Again, it has felt harder looking back afterwards than being in the eye of the storm at the time.
But, as I said above, navigating the hearing loss journey with your child is hard; day in, day out it can be exhausting, particularly in the early years when you are having to put so much into it, but you don’t necessarily see (or hear) any results. And it’s tough on the child, who has to work so hard to achieve what a hearing child automatically does as a matter of course. And, usually unbeknown to outside observers, a deaf child is often dealing with the extreme exhaustion that comes with having to concentrate on listening all day long; having our ears ‘switched on’ all day is something we typically hearing people take for granted, but it can feel like a marathon for a deaf child.
As a parent, it’s hard to keep believing at times. There are days when you feel you simply can’t go on, and days when you panic about the enormously significant life choices you have to make on your child’s behalf…Have you chosen the right communication approach? Will your child ever be able to thrive out in the big wide world? Will they suffer because they may be perceived by their peers to be a little bit different? And then the panic subsides, you dry your tears and get up again…because ultimately that’s what all parents do – they get up again and again and again for their children.
I had one of these meltdown moments, not when the final decision was made that Onna would need revision surgery, but some weeks earlier when we received a call from the hospital asking us to bring Onna in for some additional testing. I just knew that the results would point to one outcome: Surgery. Again. This outcome had been a long time brewing, but a small part of me had remained in denial, hoping this day would never come. And to cut a long story short, yes, the results are unambiguous – the best thing for Onna is to have both her implants replaced as soon as possible. So here we are now, with a surgery date set for 28th October, and thinking again about what preparations we need to make.
There will be the usual considerations – take button-down shirts so you don’t have to pull a shirt or jumper over her head, take some favourite snacks because she will have to eat something before she can be discharged and she may not like the hospital offerings, pack an overnight bag for the both of us, in case her recovery takes longer than expected and we have to stay in hospital for the night. Don’t forget her favourite teddy. A phone charger is a good idea, especially if our hospital stay ends up being longer than expected – her Daddy will be waiting anxiously at home, requiring regular updates. I will need him on the other end of the phone to help me through the long wait when Onna is in theatre.
And then there are the new considerations to contend with, like explaining to Onna what is going to happen but without frightening her (especially with her twin sister’s penchant for asking rather direct questions like, when speaking about her first surgery, “Did Onna’s head have to be cut open?” Not helpful in the circumstances, for Onna or for me! The less detail we have to think about regarding the actual mechanics of the surgery, the better.) And, critical in my view, how do I reassure Onna that she WILL get her hearing back? The first time she had surgery, she had no hearing anyway, so the situation was no different when she woke up – but this time she will wake up extremely conscious of the fact she cannot hear. For a little girl who loves her ‘magic ears’ and tells me after her bedtime story that “I don’t want to go to sleep, I want to talk all night – I love talking”, this is going to be a tough and scary time for her. I’m planning to make a visual calendar for her, so she can see her activation day as a light at the end of the tunnel, and she can cross off each day as she gets closer to the day her ‘hearing’ will be restored. I also need to prepare her for the reality that, when her new implants are switched on, we may all sound slightly different to her, until her brain adjusts to the new stimuli. Hopefully, there won’t be too much difference, but it will be enough to be noticeable. So, she needs to know that her Mummy is still her Mummy, even if she sounds weird and squeaky (or more so than normal.) Ditto for Daddy and her beloved twin sister, Sala.
Psychologically, this time around feels harder for me. Beyond the risks inherent in any surgical procedure, it feels like we have so much more to lose. Onna’s first surgery went so well and gave her the magical gift of sound. She had an easy recovery without pain, nausea or loss of balance. She was home that very evening after surgery, eating fish and chips and looking like a tiny brave astronaut with her bandaged head. What if it doesn’t go so well this time around? What if the new cochlear implants don’t work for her? It is a possibility; nothing is 100% guaranteed. The repercussions are unthinkable, but as her mother, of course I think about them. Not so calm this time around, clearly.
And then there’s COVID-19. This throws an additional spanner in the works, for it means only one parent can accompany Onna to hospital (that will be me, but I think it may be just as difficult for Ian having to stay at home all day feeling helpless). And perhaps even harder is the fact I won’t be able to accompany Onna into the sedation room, which at least Ian and I were able to do first time around. I am trying to steel myself for the moment I have to watch her being wheeled away from me, inevitably frightened, and not being able to go with her and hold her as she falls sleep.
It seems so ironic that her implants are showing themselves to be failing just when Onna’s access to sound is so great and her progress in speech and language, and everything that comes with it, is in such a steep ascendancy…but we also know that we are incredibly fortunate to have one of the world’s premier cochlear implant centres practically on our doorstep. Plus we have such an incredible support network to help us get through this and out the other side, guiding Onna’s journey back into the hearing, speaking world after hopefully just a short hiatus without hearing in between her surgery and re-activation.