Out with the old, in with the new!
Onna on the eve of her revision surgery: “Mummy, I don’t want new magic ears, but I will be brave.”
Sala, sending a virtual wave to her sister in hospital.
Can it really be almost four months since my previous post? I guess that happens when too much life comes to pass all at once…since writing last, I have released two children’s books—one for six to eight-year-olds, the other for very early listeners—it was our twins’ seventh birthday, then Christmas came along, then another lockdown and home-schooling again (all accompanied by constant puppy chaos) and, as you will know if you have been following my intermittent blog ramblings, our daughter Onna had her bilateral cochlear implant revision surgery. That was back in October already, and if you don’t mind, I’m going to take you back there now and describe it all in some detail, as some readers may be curious to know how it all went and whether or not my pre-op anxiety was justified – especially if said readers are facing a similar situation with their own children.
We told Onna and her twin sister Sala about Onna’s surgery about four days beforehand. We wanted to find the right balance between (a) giving both the girls enough time to prepare mentally and to ask questions, and (b) telling them too soon so that they had too much time to think about it all and possibly become over-anxious. There was also a fine line between explaining to the girls that Onna was going to get new magic ears and not giving them too much information about what the surgery would actually entail, which would be frightening for them both. Most importantly of all, we had to explain to Onna that for two weeks following her surgery, she would not be able to hear. The incisions behind her ear would have to heal significantly before the new devices could be activated. It was very important to prepare her for this, so that she did not panic or get scared by the temporary loss of her hearing and understood that her hearing would return again as soon as her new devices were activated. Sala, ever the compassionate twin sister, burst into tears as soon as we broke the news but then caught herself and stopped crying, “so that I don’t frighten my sister.” This is Sala in a nutshell – so caring and loving, yet equally brave and strong when the chips are down – we are so lucky to have her in our family.
Onna took the news of her operation calmly, and merely asked, “Will Sala go to school without me?” (How fortunate we were with the timing – the surgery fell right at the beginning of the half term holiday so Sala would be home with Onna for 10 of the 14 days she would be without hearing.) However, despite outwardly seeming extremely relaxed, Onna was obviously thinking about what was to come, as in the days running up to her surgery when she was in the middle of doing something completely unrelated, she would suddenly ask me a question like, “Will the doctors hurt me?”. And on the eve of her operation, sitting at home with our puppy Digby on her lap, she said to me, “Mummy, I don’t want to have new magic ears, but I will be brave.” Oh my, how my heart nearly burst with love and admiration for this beautiful little being, so much more courageous than me!
The final countdown started with Onna’s COVID-19 test two days prior to her operation, after which the whole family self-isolated at home. Having heard ‘horror stories’ of parents trying to administer COVID tests to their own children in drive-in testing centres, I was immensely relieved that a nurse at the hospital would be carrying out the test for us, and in the end, it was swift and easy: first a swab at the back of Onna’s throat (not so pleasant, I’m sure, but so quick) followed by the swab up her nose, which made her giggle and squirm – “Mummy, it tickles!”. So at least we left the hospital laughing, and when it came to having a second lot of swabs (this time for MRSA) when she was admitted for surgery a couple of days later, she wasn’t fazed.
Onna’s surgery was scheduled for 2pm on October 28th, and so she had to fast (or “starve” as it said on the preparatory paperwork) from the previous evening. We arrived at the hospital at 11am as requested, and instead of going into a communal waiting area/playroom as we had done the first time Onna underwent cochlear implant surgery, we went straight to her designated bed on the ward. This was due to COVID-19 precautions. For the same reason, only one parent was allowed in the hospital with Onna, so Ian and Sala dropped us off before going into Cambridge for a treaty brunch and then heading home for the day.
Safely arrived at the hospital - feeling a little anxious.
As soon as we were settled in our assigned cubicle, anaesthetic cream was administered to the back of both Onna’s hands so that a cannula could be inserted if necessary. A member of the surgical team came to talk to us, and later so did the anaesthetist, to prepare us for the operation. Did we want to use gas or intravenous anaesthetic? asked the anaesthetist, having explained the pros and cons. Last time, we had used gas because Onna was so much smaller then and inserting cannulas into tiny hands can be tricky and upsetting, but it had been difficult for Ian and me, holding her as she fought and struggled against the mask and frantically tried to pull it off before finally succumbing. That was traumatic. As every mother will no doubt agree, I don’t like watching my child going under, it feels unnatural and it goes against every maternal bone in my body. It’s so different to watching them fall asleep in their bed at home – it’s that total, complete stillness, which you don’t get in a natural sleep. Even though your rational mind knows why it’s happening and has made these decisions for all the right reasons, it feels so wrong. This would be the third time Onna had been put under a general anaesthetic. The first auditory brainstem response (ABR) test she had had as a two-year-old was just under sedation, but her second ABR and MRI scan were under general anaesthetic, then her first bilateral implant surgery and now this revision surgery. The anaesthetist said that the intravenous option was quicker, calmer and painless, and he preferred this option. “Okay,” I agreed, “let’s go with that then.”
It turned out to be a long wait for Onna… Two o’clock came and went. Two-thirty…three o’clock…three thirty. Rumour on the ward was that an emergency surgery had pushed back the scheduled surgeries. Having not had a bite to eat since 7pm the previous evening, it was a long time for a little girl to sit and wait patiently in bed, unable to run around or eat anything, and only allowed a few sips of water every hour, but Onna was a trooper as usual. She only once said, “Mummy, I’m hungry” and I reminded her that she wasn’t allowed to eat until later. Uncomplainingly she replied, “Okay Mummy.” By then we had exhausted our jigsaw puzzles and books brought in from home, and the nurses kindly provided us with a small mobile DVD player – The Gruffalo, an old favourite, came to our rescue. Then some action! A teenage boy with what appeared to be an assortment of broken bones was brought into the ward to recuperate following his operation. A nasty rugby injury, apparently. He was in the cubicle opposite us. Onna was fascinated by a small trickle of blood seeping out from under his bandages. Not exactly what I had hoped for before she went in for her own operation, but Onna seemed to welcome the distraction.
Still waiting…but ready to go when called.
Finally, the call came for Onna. Favourite cuddly toy in arms, DVD player still rolling, she was wheeled down the corridor to the anaesthesia room with its polished steel doors connecting it to the operating theatre. Thankfully, the most severe COVID-19 restrictions had been lifted and I was allowed to accompany her, having previously been warned that this may not be possible. There was nothing fancy about the anaesthesia room – small, functional, sterile, as one might expect. Walls filled with from floor to ceiling with metal shelves of medical equipment, a couple of stickers of fish and an octopus stuck on the doors in a valiant effort to soften this stark room. First, the anaesthetist inserted a cannula into Onna’s hand. The nurse tried to position the DVD player on the bed so Onna couldn’t see what was happening, but she was having none of that. She wanted to watch what was going on with her hand. Then a saline drip was fed into the line to hydrate her, followed by the viscous white liquid that would put her to sleep ever so quickly. It was swift and painless for Onna, and off she went, wheeled into theatre and out of my sight. I couldn’t help it. I cried. No matter how much you try to prepare yourself for it, that moment always feels so overwhelming, when your child’s wellbeing is taken out of your hands so completely, when you know that, however small, there is a risk now to their safety – the small but present risk inherent in any surgery. Oh yes, of course, I knew she was in the care of one of the world’s top cochlear implant surgeons (how lucky we are to have this incredible team and wonderful hospital right on our doorstep!) but still, it was hard. And it had already been a long day of waiting and nerves jangling a little tighter with each hour that passed. “You need to go and get a cup of coffee and something to eat,” said the nurses kindly. “You probably don’t feel hungry, but you’ll need some sustenance.” I had fasted all day with Onna yet did not feel hungry, but I took on board what they said. Besides, I had to fill the time somehow.
Armed with my pager, which would call me back as soon as Onna’s operation was over, I made my way somewhat unsteadily to the café in the main hospital concourse, almost falling on the stairs (the bumph I had been given to read beforehand had warned me of this – parents getting lightheaded and weak, especially during this time of COVID, when they did not have their ‘other half’ to lean on in hospital, but to be honest I hadn’t expected it to happen to me.) The café was only open for takeaways as the seating area had been closed, again due to COVID, so I took my coffee and sandwich back upstairs to the ward. There was a small parents’ waiting room there – really just a tiny kitchen with a small table and a few chairs, but it was a welcome, quiet, private space, and I was grateful to be able to sit down and just stare at the walls for a while. No-one else was in there. I felt exhausted. I called Ian to update him. And then I just waited. I had brought my Kindle but didn’t feel like reading. Just sitting quietly was all I needed and somehow a lot of time passed without me really registering. From time to time I glanced at the pager, which had gone completely blank. No reassuring lights or anything at all to show it was still working. After an hour or so, I returned to the ward and sat on the chair next to the space where Onna’s bed had been and where she would be wheeled back to later that evening. Too much time now seemed to be passing. The surgical registrar who had come to see us before the operation had said they were expecting a relatively quick procedure today, despite having to replace both Onna’s implants. It should be quicker than her first surgery four years ago. I was expecting Onna to be out by now but maybe that was just my nerves feeling like more time had passed than it really had.
6pm… A little girl in the next-door cubicle, just on the other side of the curtain from me, started screaming and screaming. I couldn’t see anything, but it was impossible not to hear what was going on. She had just had cochlear implant surgery too and was not enjoying the aftermath. The nurses were trying to remove the cannula from her hand so she could go home, but the little girl was frightened. I could hear the desperation in her exhausted mother’s voice, trying to stay calm but feeling at the end of her tether. Gosh, the screaming! Poor child, poor mother. Everyone’s nerves stretching and stretching. And where was Onna? Why was she not through yet? Was she going to have a tricky recovery like this too? Eventually, a team of nurses and the mother managed to restrain the little girl and pull out the cannula. Instant relief! The child immediately stopped screaming and within minutes was on her mother’s hip being carried out of the hospital and home.
6.30pm. The surgeon and his team appeared, but still no sign of Onna. They first went to a family further down the ward then came to me. “The surgery went very well,” said the surgeon (oh, the relief!). “I think we got full insertion of both the electrode arrays, and good responses from the nerves on both sides. Onna is in the recovery room now. You’ll be called down to join her soon.” Joy! I’m so filled with gratitude for these incredibly clever people and this miracle technology that gives our profoundly deaf little girl access to sound. This team had operated on three children today, performing their magic and literally changing lives. Just amazing when you stop to think about it.
It seemed like another long wait before my pager buzzed, but it wasn’t really – probably only ten minutes after the surgeon left. When I arrived at the recovery room adjoining the operating theatre, I found Onna still fast asleep. Looking very peaceful, no bandages, just some neat scars behind her ears, awash with brown disinfectant. The recovery nurses were not having much luck in rousing Onna. It was 7pm and she was not showing any signs of wanting to wake up. Was this unusual? Concerning? It’s usually a bit quicker but it’s okay, said the nurses. A few minutes later, they checked her blood sugar levels just to make sure. Heart rate, pulse, blood oxygen levels, all okay. All vital signs were fine, she was just taking her time to come around.
When I arrived in the recovery room, I found Onna with no bandages but lots of brown disinfectant everywhere…and still fast asleep.
As chance would have it, one of the specialist recovery nurses had severe hearing loss too and had a middle ear implant. She had been operated on by the same team as Onna some years back. What an inspiration!
By now it was Onna’s usual bedtime, and here we were trying to wake her up from the anaesthetic – all very confusing for her little body-clock. At 7.10pm Onna briefly opened her eyes, frowned, said “I want to go home” and promptly fell asleep again. 7.30pm, eyes open again. The nurses were keen for her to have something to drink. I offered Onna some water through a straw – she must feel parched by now, even though she would have had some intravenous fluids during her operation – and she managed one or two tiny sips before falling asleep again.
Reluctant to wake up and a little confused.
Around 8pm, though still much more asleep than awake, the recovery nurses discharged Onna back to the ward, where we would have to wait until she was properly awake before it was safe to take her home. At 9pm, I asked whether I should call Ian and ask him to bring in our overnight bag that we had packed just in case. “Let’s see,” said the nurses. “Let’s give her a little more time.” I knew they wanted to see Onna eat something and do a wee before they would allow us to leave. I had brought all Onna’s favourite snacks from home, but she just wasn’t interested. All she wanted to do was sleep. And then suddenly, at around 10pm, it was like a switch flicked inside her. She sat up in bed and said, “I want to go home.” I helped her to get up, walk to the toilet, do her wee and then back to the bed. The nurses called the surgical registrar to update him and he said he was happy for Onna to go home. I called Ian on the phone who drove in to collect us. Onna and I said our goodbyes to the nurses and an otherwise now deserted ward and then walked down to meet him (Onna showing me the way when I mistakenly made a wrong turn when trying to find the lifts – how did she still have such good bearings after what she had just been through?). I don’t think Ian was expecting to see Onna walking out of the hospital on her own two feet, but that’s Onna for you, independently minded as always! With much relief all round, we finally got home at 11pm. It was only twelve hours since we had checked into the hospital, but it felt much longer…
11pm: Tired but ever so happy to be back home with her twin sister.
That night and the next night, I swapped beds with Sala so that I could sleep next to Onna. Having struggled to wake up after the anaesthetic, Onna now couldn’t get back to sleep again, even though it was now extremely late at night for her. She just couldn’t get comfortable, switching from side to side but unable to settle. She said, “Mummy, my new magic ears are annoying because they hurt,” but she refused to take any pain medication. The following night was better but still restless, and then that was the end of that – back to normal sleeping patterns again and very little discomfort.
The morning after her surgery, Onna looked tired but she was up and about as usual, playing with Sala and Digby. We tried to prevent Onna doing anything too active for the first two weeks after her surgery but with her being such an energetic child, this was easier said than done…but we did our best.
The day after surgery - delighted to be back with Digby, our puppy
I made a visual calendar for Onna, showing activation day two weeks after her surgery – the light at the end of the tunnel! Each evening at bedtime, there was great excitement when crossing off another day. Sala and Onna extended the calendar so they could also count down towards their seventh birthday and beyond that to Christmas. And I was counting down the days until Onna was allowed to wash her hair again too!
Because Onna is a good lipreader and so astute at reading situations, she coped remarkably well for those two weeks of total silence. Only once or twice did we have to resort to writing something down for her when she couldn’t understand what we were saying. Surprisingly, she continued to speak normally to us throughout this period. We had been warned that she might stop speaking after a few days as she couldn’t hear herself and couldn’t hear feedback, but this wasn’t the case – she kept on talking and was also able to regulate her voice. I had expected her maybe to raise the volume of her voice in an effort to hear herself speak but this didn’t happen. After about a week, she said to me, “Mummy, I want my old magic ears back. I want to hear,” but on the whole was extremely patient and resigned to her temporary loss of hearing. Having been able to talk ahead before her surgery and explain to her what would happen really paid dividends – there was no panic or fear, just a little sadness at times.
Every family’s hearing loss journey throws up unexpected situations. One distinction I never anticipated having to explain during my lifetime was the difference between a T.Rex and an x-ray!
One day before activation of Onna’s new implants, we had to go back to the hospital for an x-ray and post-op check-up with a specialist nurse. (The hospital had tried to schedule these on the same day as her activation to minimise trips to hospital during COVID, but just couldn’t make it work – but I understand many families at the moment have all three appointments on the same day, one after the other.) The x-ray confirmed that both electrode arrays were fully inserted and had not slipped since surgery – good news! And Onna’s scars were healing nicely, with no sign of infection – we were ready for activation!
Activation day felt quite nerve-wracking – this was the moment of truth. Having seen the x-rays showing the electrodes all in the right place and knowing how well Onna adjusted to her first implants, there was perhaps no reason to be nervous, but mothers always will be! Onna’s internal devices had been replaced during surgery, but her external devices (processors and batteries) were the same ones she had before. We had to change the headpieces though, because the new implants had the 3D MRI-safe magnets (another bonus of getting new implants, should Onna ever need an MRI scan) and this required a different type of external magnet in the headpiece. Then we were ready to get started…
Onna was “all wired up” to the audiologist’s computer and her devices were activated. Nothing. No reaction at all. Oh my goodness, what’s going on? This was not in the script. The audiologist adjusted some settings, tried again, made more adjustments. Then, bingo! Onna could suddenly hear again. “You sound squeaky,” she said. We all laughed. Happiness and relief. That Onna was immediately able to understand speech again was something I had not necessarily expected – I thought it would take her brain some time to adjust to the slightly different stimuli from the new implants. But she could understand speech, and she was so happy! By the time we left the audiologist’s office after a couple of hours of testing and programming, Onna said I sounded normal again and all the squeakiness had gone.
As we walked back to the car, Onna seemed to be bouncing on air, so full of joy and excitement to have her hearing back again. Just watching her made it all worth it – not just this latest surgery, but all of it – moving countries, changing careers, the hard work and exhaustion, the hours spent driving to our auditory verbal therapy appointments, ongoing speech and language therapy... I know some parents wonder whether getting cochlear implants for their deaf children is the right thing to do, and it’s a very personal decision based on each family’s own values and circumstances. But when I look Onna, when I see and hear her love of talking and being so enthusiastically engaged in every aspect of her life, both at school and at home, I am convinced this is the right path for her.
For a couple of days after activation, Onna said that our voices sounded squeaky when she first put on her magic ears in the morning, but it only took a few minutes for us to sound normal again. After three days, there was no residual squeakiness at all. Oh, for the elasticity of a young brain, able to adapt so quickly! And in no time at all, Onna was back at school again too, albeit on a low-activity schedule to begin with (which was hard for Onna who likes nothing better than to tear around with her friends, playing football or tag, or hanging upside down on the Tarzan ropes.) For a couple of weeks, Onna wore her processors clipped to her shirt so she did not have anything aggravating the scars behind her ears. She found that set-up a little irritating as almost every movement would pull off her headpieces, but it wasn’t too long before she was able to start wearing her processors on her ears again.
Many deaf children like Onna have such strong visual recall. Onna’s drawing of the hospital contained some well-remembered details, like the fish and octopus stickers and the cubed shelving in the anaesthesia room, the two different sets of lifts and the alternative route up the stairs…plus a smiling doctor!
And now here we are, three months after activation, and the difference in Onna’s speech clarity is incredible, particularly with the high frequency /s/ sounds. She is also now saying all the final sounds in words, which she had often dropped before. Clearly, she is hearing these high frequency sounds so much better than she was with the old implants, and she is also able to hear the word endings. What a difference the new implants have made – just incredible! I am so grateful that Onna was able to have this surgery before her old implants failed completely and before the second winter of COVID really started biting, and touch wood, I’m so thankful that they are working as well as they are. When we returned to the audiologist for a programming session two weeks after activation, Onna’s results showed excellent access to sound across all frequencies on both sides, and she scored 100% in the discrimination testing between similar sounds. What more could we ask for?
As for Onna, for a while after activation she kept saying to me, “My old magic ears are better than the new ones.” Really? How come her speech clarity had improved so much if she wasn’t hearing so well? And then I understood: Onna hadn’t fully realised that she had new implants inside her head. As far as she was concerned, she couldn’t hear for two weeks after she got her new magic ears (how useless they must be!) but as soon as she got her old ones back again, everything worked again – she was referring to her processors – her old magic ears, which in her mind, solved all her problems as soon as she put them back on. So now, with the surgery behind us and no need to be quite so delicate with the details, I have explained to her that inside her head she has new implants, which is why she went to hospital for surgery, while on the outside she still has the same old processors - and together, they are doing a great job!
