In my capacity as a Parent Ambassador for Auditory Verbal UK (AVUK) and author of books for deaf children, I was asked to write an article for the March newsletter of the Cochlear Implanted Children’s Support Group (CICS). Some of you may have seen this article posted already on AVUK’s site or indeed in the CICS newsletter itself, but for those of you who haven’t, here is a copy of the article:

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“Who on earth diagnosed this child?” asked the specialist. My husband and I looked at each other and then back at the specialist, realising in that moment that we had some tough news coming our way.

Our daughter, Onna, was almost two and a half years old. Of course, we had noticed that she was having trouble hearing and was not developing early speech, but we had been assured that this was due to glue ear, which would self-rectify in due course, so we had nothing to worry about. Onna would be fine and would have no problem catching up with her chattering twin sister, Sala.

We were living in Kenya at the time, but our story started in New York City, where Onna and Sala had surprised us with their unexpectedly early arrival into the world – they were born at 28 weeks and spent over 60 days in the neonatal intensive care unit (NICU). Some few months later, we were able to fly home to Kenya with them. They had both passed their new-born hearing screening before being discharged from the NICU so, two years down the line, when we were told not to worry about Onna’s hearing, we made the mistake of doing exactly that. Because she had passed her new-born screening, we believed the glue ear diagnosis must be right. We had no reason to doubt the diagnosis until, a few months later, we were on holiday in UK and decided to seek a second opinion, just for safety. That’s when our lives were turned upside down.

We discovered the truth, that Onna had severe-profound sensorineural hearing loss and auditory neuropathy spectrum disorder (ANSD) in both ears. Her only chance of ever learning to listen and speak was to get bilateral cochlear implants and undergo intensive speech and language therapy. Without hesitation, my husband Ian and I decided there was only one thing for it: we would change our lives completely in order to provide both our daughters with the best life chances possible – and there was no time to lose. So, having arrived in England for what we thought would be just a 10-day visit with family, the twins and I suddenly found ourselves house-hunting and starting a brand-new life in Cambridgeshire, while Ian went back to Kenya to close down our entire life out there. Onna had bilateral cochlear implant surgery just as she was turning three years old. At that point she was completely nonverbal.

We had been thrown into a completely new world about which we knew absolutely nothing, but our initial research us told us one vital thing: early intervention is key when teaching a deaf child to listen and speak. We learned (to our dismay) that the first three years of a child’s life are critical for the development of language, but you still have a pretty good window of opportunity until they are five. After that, things get much tougher – not impossible, but tougher and slower. Onna, aged three and only just having gained access to sound through her cochlear implants, was classed as a ‘neurological emergency’. We had to start stimulating her auditory brain as soon as possible. Ian and I had no idea of the scale or nature of the task ahead, nor what precisely it would entail, but we knew we would do whatever was necessary to help Onna develop speech and language and all the cognitive, emotional and social skills that go alongside. Our ultimate goal was that she should be able to access the same opportunities in life as her hearing twin sister.

We respect every family’s right to choose their own communication approach for their deaf children. Everyone has different circumstances and different values, and it is a very personal decision. We chose to pursue a listening and spoken language approach with Onna for many reasons. We believe a child needs to be surrounded by fluent language in order to learn language, and with the best will in the world, Ian and I were not going to become fluent in British Sign Language (BSL) quickly enough to give Onna the language support she needed straight away. Plus, we believe that being able to listen and speak will open up far more life choices for her in the end. Let’s do the hard work early on so that her life is easier later on, we thought. We would never stop her learning sign language as a second (third or fourth) language if she wanted to when she was older, but to start with, we were going to focus 100% of our efforts on spoken language.

We chose to enrol Onna in Auditory Verbal UK (AVUK)’s auditory verbal therapy programme because we liked their aspirational, diagnostic-led approach, which mirrored Ian’s and my attitude to life in general: reach for the stars while keeping your feet firmly grounded in reality. We knew Onna was going to have to play catch-up and work very hard, as she had missed out on three years of hearing, which put her a long way behind her peers in speech and language. She also had ANSD to deal with, so there was an awful lot for her brain to figure out before she could start putting it together and make sense of it all. Later on, we discovered that both her implants were failing, so she had been contending with that too. It’s no wonder, perhaps, that Onna initially made slower progress than anticipated. She worked hard, we worked hard, progress was coming but slowly, slowly. At times, we know that people wondered if we were making the right decision to pursue a listening and spoken language approach with her, but we kept seeing small but definite indicators of progress, especially at home, even if she would not always “perform on cue” when at Nursery or during her therapy sessions. These glints of progress gave us hope, and we continued to trust our gut feeling that Onna would get there in the end – she would do it at her own speed, but she would get there. And then, after about 18-20 months of auditory verbal therapy, Onna suddenly seemed to turn a corner, and her progress since then has been exponential. She has recently undergone revision surgery to replace both her failing implants. She sailed through the surgery and recovery much more smoothly than I thought possible, and the new implants are working wonders for her. There are many seminal moments I could share with you from our journey so far, and I’m sure many of you will recognise them from your own journeys – the first time your child said, “I love you” or, before that, the first time they turned to their name. These may seem like small steps for some people but are huge strides in our world.

Onna has always faced her challenges with such determination, courage and joy. She is a happy child and this, above all, is our yardstick. If she were miserable or frustrated, we would question the choices we have made and are still making for her. She is now seven years old, is a complete chatterbox and has age-appropriate reading skills (she is a bookworm). She loves music, football, swimming and riding her bike, is forming strong friendships and attends mainstream school alongside her twin sister. She is still speech delayed compared with her peers, but she is catching up fast. Her progress now is remarkable – her strides forward take our breath away and make us proud every single day - but she still has to work very, very hard. Subjects like maths, which (ironically) require such attention to the subtlety of language, are extremely difficult for her. But I’ll never forget the evening when, after bedtime story, Onna turned to me and said, “Mummy, please don’t go. I want to talk. I love talking. I want to talk all night.” For me, that incredible moment vindicated our decision to go down this difficult path, to keep striving for what had once seemed almost impossible.

Nonetheless, when I think about the mountain Onna has had to climb and is still climbing, it’s hard not to think of the “what ifs”. What if we had taken her to see a specialist sooner? What if she had got her cochlear implants two years earlier? How much easier would it have been for her? These are questions which can drive you crazy. We are where we are. But whenever the parents of newly diagnosed, profoundly deaf babies ask me for an opinion as to whether they should get cochlear implants for their babies straight away or whether they should wait and see if things improve, or even whether they should wait until their children are old enough to make the decision for themselves, my answer is always the same: do it now and start therapy to stimulate their auditory brain as soon as possible. Do it as soon as you can because the longer you leave it, the harder it is for your child.

And my second piece of advice (should it be asked for!) is this: as a parent, be prepared to immerse yourself in your child’s hearing loss journey, for this offers your child the best chance of success. There is no better guide, no stronger advocate, no greater champion of your child than you. This was another thing that attracted us to auditory verbal therapy: it puts parents in the driving seat. Your auditory verbal therapist will check in fortnightly with your child to monitor their progress and set appropriate goals, but above all they will train you as the parent to guide and inspire your child along their listening and spoken language journey. No-one has a greater incentive to see their child succeed than the parents, no-one spends more time with their child when they are young, and no-one knows their child as well, so parents are ideally placed to drive their child’s progress. Auditory verbal therapy constitutes more than just a schedule of therapy sessions; it becomes a lifestyle. For it to work best, it needs to be integrated seamlessly into every aspect of family life. This is not as hard as it sounds – your therapist guides you every step of the way and very soon it becomes second nature. Onna left the AVUK programme almost two years ago, but I still use auditory verbal strategies every single day at home, both with Onna and her hearing twin, Sala.

Since graduating from AVUK, Onna has continued to have an incredible support network around her, including dedicated professionals from the NHS and Cambridgeshire SEND Services, as well as her school, which has always provided such a nurturing, inclusive and motivating environment for her. When it comes to the people who have worked with Onna in the past, and those who continue to work with her and our family, I feel like we have won the lottery. It is thanks to all of them that Onna is now making such fantastic progress – combined with her miracle technology, her own hard work, her twin sister’s utter dedication and all the family’s wholehearted commitment - but I still trace back the root of her current progress to the foundation built by auditory verbal therapy, which four years ago opened a doorway in Onna’s auditory mind and taught her first and foremost to listen, as the basis for later learning to speak. It’s a long road, it’s a hard road and it can be bumpy. We still have a long way to travel along it together as a family, but now that we are on it, I wouldn’t change it for the world.

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For International Cochlear Implant Day on 25th February, I made this video of Onna talking about her ‘magic ears’. To me, the sheer joy that she feels at being part of the hearing and speaking world makes it all worthwhile - all the hard work, the endless hours on the road to and from auditory verbal therapy appointments, the hours of speech and language therapy, the agonising choices around communication approaches, the moving of our entire life from one continent to another, a complete career change. I just feel so grateful that we have been able to help Onna to find her own voice…and so much laughter.

It was an honour to be featured both on radio and TV during the week of International Cochlear Implant Day and World Hearing Day. You can listen and watch here:

BBC Radio Cambridgeshire - International Cochlear Implant Day

ITV Anglia - World Hearing Day

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.

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.

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.

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.

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…

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.

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.

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.

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!

We’ve got a lot going on just now. (Don’t we all, I hear you cry, that’s just the nature of things…). As you know, we are counting down the days until our six-year-old daughter, Onna, has her bilateral cochlear implant revision surgery – just five days to go now. We have been waiting until the half term holiday starts (later today) to tell Onna and her twin sister Sala about the operation and the challenges Onna will face during the recovery period afterwards when she will have no hearing whatsoever for a few weeks. We didn’t want to tell them while they were still at school for fear that, out of innocent curiosity, the other children might ask some altogether too direct questions about the actualities of the surgery – not something we want Onna to think too much about. I’m not looking forward to telling Onna and Sala because I know they will both be fretful about what lies ahead, as indeed we all are, although Ian and I are aware that we need to mask our own anxiety for the sake of the children. In addition to planning the practicalities of surgery day for Onna, we have to plan ahead for Sala too, because we do not underestimate the impact that this experience may have on her. She is such a caring little soul, who adores her twin sister, and while she will face the day and what follows with stoicism, we know she will feel it keenly.

But first to more uplifting events. Enter Digby, our gorgeous new puppy (a.k.a. Digby-Dog, Diggers, Little Man). We have been talking about getting a dog for a long time – we feel it is so important for children to grow up knowing and loving animals – and what better time than this? We decided now was the ideal moment and we were so fortunate to find Digby just when we did. Ian drove to Wales to collect him last week (what a stroke of luck, nipping in and out of Wales just before it locked down completely) and we have all been besotted ever since. Digby will certainly be a playful distraction and ideal companion for Onna and Sala during the next few weeks of upheaval, and a wonderful friend for life – Onna has already informed us that when she is a grown-up, she is taking Digby to live with her! She has finally found someone who loves to play rough-and-tumble games and to run, run, run as much as she does, and they tear around the house and garden together causing havoc. Sala is still a little more timid with Digby, especially when he’s in an excitable mood, but she is equally enamoured in her own gentle way by this beguiling little black Labrador. Already in one short week, Digby has certainly brought both joy and chaos to our home, and the necessity for extra vigilance when it comes to Onna’s cochlear implants – I know from Facebook conversations that many a precious hearing device has been chewed up by puppies!

Onna’s surgery is scheduled for this coming Wednesday, at Addenbrooke’s Hospital in Cambridge, the same place where she had her initial surgery four years ago. Ian and I just had the pre-op call from one of the nurses who will be caring for Onna on the day (as well as doing her COVID-19 test on Monday). The purpose of the call was to go through a long list of medical questions to ensure that Onna is able to undergo the general anaesthetic as safely as possible, and also giving us the chance to ask any questions. A huge shoutout to the Addenbrooke’s team for their attention to detail and making us feel as comfortable as possible about the impending procedure, even asking whether Onna lipreads (yes, very well) so that they can ensure all the nursing staff involved in her care on the day will wear clear visors instead of masks. After Onna’s COVID-19 test on Monday, our whole family will self-isolate until Wednesday, when we have to get to the hospital at 11am in preparation for a 2pm (or thereabouts) start to the surgery. Frankly, I just can’t wait for it all to be over now, and for us to be out the other side and looking ahead again…

This past week, we have also been making the final preparations for Onna’s EHCP review, which will take place in November. Although I am not familiar with the systems in other countries, I believe an EHCP (Education and Health Care Plan) in UK is broadly similar to an IEP (Individual Education Program) in the USA and an Individual Education Plan in Australia. These plans seek to ensure that children with disabilities and/or special educational needs receive the requisite support and don’t “fall through the gaps”. In the UK, the EHCP has replaced what was formerly known as a ‘Statement’, and from what I gather, the EHCP is a great improvement on its predecessor. I like the fact that (quite rightly) parental input is a key part of the EHCP, which I believe was not always the case in the past. The EHCP review is an annual exercise to analyse Onna’s progress, targets and support requirements; the review is then used to draw up the final Plan. Like most parents of children who have to work extra hard to achieve the same results as their peers, I find this kind of assessment quite stressful because, in order to ascertain what is the next step, you have to test the limit of your child’s current attainment and focus on what they still cannot do, rather than celebrating what they can do. It can make upsetting reading because, instead of seeing your child as a complete little human being doing incredible things and developing into a radiant personality full of joy and optimism, you are forced to look at her in terms of boxes that can or can’t be ticked, percentages compared with ‘average children’, targets fulfilled or missed. It can feel soul destroying. I know it’s necessary in order to devise the best ongoing plan for Onna, but it is still tough. Considering her challenges, Onna is good at reading, but she’s behind in maths, which (ironically) requires a good command of fairly complex language. Momentary panic – Help! How will she ever cope in the big wide world? Then I pause for thought and remember, she’s only six years old. Her rate of progress now across the board is accelerating exponentially, in speech and language, social interaction, confidence and general development. Yes, she’s doing just fine and she’ll get there. It’s all too easy to get caught up in the figures and percentages and not see the big picture or the whole person.

I am aware how incredibly fortunate we are to live in a country where there is multi-layered support for children like Onna. I know the system is not perfect, and the degree of support varies; winning enough support for your child can sometimes feel like a lottery. We’re lucky. I feel like we have won the jackpot, for we have such an amazing support network around Onna. And while the system in UK inevitably falls short in some areas and there is always room for improvement or an argument for more funding or different funding priorities, the truth is that, compared with most countries in the world, the support here is nothing short of remarkable. I never forget the harsh reality that, had the lotto of life placed her in one of any number of other countries around the world, where there is little or no institutional support for children like her, Onna would have been consigned to the shadows, labelled ‘deaf and dumb’ and all but forgotten by the system, but not here – here she is supported and cherished, and we are able to hold out high hopes for her. And for that I am enormously grateful. Ian and I have also worked hard as her parents to extend this circle of support and to reinforce everything provided in Onna’s formal therapy and educational settings with support at home – no matter how much government funding or professional support is provided to a child, without that central, fundamental piece in the puzzle – support at home - the jigsaw can never be complete.

Into this week’s eclectic mix, I throw another tidbit: I have been reviewing the proofs of my new picture book, LING LING BIRD Seen and Heard. To be honest, this has been an exciting time for me. I have wanted to do this for so long; writing has always been a love of mine, and to combine it now with a cause I feel so strongly about and a subject matter that our family literally lives each day is so rewarding. To finally be so close to publishing this book (the first of many inside my head) is truly gratifying. The book is ‘ready to go’ now and I have wrestled with the decision of whether to launch it before or after Onna’s surgery. I have decided on the latter, so that I can focus on my family now, and then, once we are all through these choppy waters and out the other side, I can put my mind more freely to the release of my book, which in turn launches my new company and a host of other books to follow.

You can read about Ling Ling Bird and the new book here, and I’ll definitely also be writing and talking some more about the inspiration behind the story prior to publication day on 17th November. In the meantime, here’s a little sneak preview:

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.

To blog or not to blog? That is the question. For a long time, I have wanted to share my experiences of parenting a deaf child in order to help other parents starting out along a similar path and to exchange views on how to approach the many tricky situations and decisions we all face on this remarkable but tough journey. My hesitation to do so until now has been the consideration of our children’s privacy. My husband Ian and I have twin daughters, Sala and Onna, currently six years old. Onna is profoundly deaf, Sala is typically hearing. When they are old enough to understand, how will they feel that their story has been online for anyone and everyone to read? Ian and I have discussed this at length, and in the end the answer was quite clear to us. This story is not one of shame or regret, it is one of pride and perseverance – of daily challenges and daily triumphs. We’re not kidding ourselves - we still have a long way to go on this journey. And yes, there have been some extremely difficult times, and there will be again (it can be a rocky road at times), but ultimately there is nothing here not to celebrate and share, especially if it can help others.

When Onna was first diagnosed with profound sensorineural hearing loss and auditory neuropathy spectrum disorder (ANSD), there was much information to be found on the internet – I would mention the National Deaf Children’s Society website in particular as a reliable source – but the stories I really wanted to read were the personal ones. How did other parents deal with a similar diagnosis? Were there stories of hope out there that we could latch onto? Were there any pitfalls that we needed to be aware of? That’s when I found a blog called Alice’s Ears, which not only reassured me that success stories are out there (I was so new to all this at the time, I did not realise that success stories actually abound!) but it also made me realise that there is more than one option when choosing your child’s communication approach. The blog also pointed me in the direction of some useful additional information about ANSD, which remains a tricky condition to diagnose, even today.

Studies like this one published in 2019 suggest that peer support is extremely useful as part of a multidisciplinary approach seeking successful outcomes for deaf children and their families: “…63% judged that a parent who had a shared experience was the person best placed to offer help and advice immediately following the diagnosis of childhood deafness….An overwhelming 97% would recommend peer support as being useful.”

Having said that, I don’t think many of us parents need studies to convince us of the value of parent-to-parent support. Face-to-face meetings are great if you happen to live near other families with deaf children (and are able to do so with current COVID-19 restrictions), but I find online support equally helpful, where the net can be cast much wider resulting in a broader range of shared experiences.

Several years down the line now, with almost seven years of parenting a deaf child behind me (and still learning new things every day), I am a member of many online communities where we support each other, help each other out on the hard days and celebrate our children’s breakthroughs together. Of course, all children are individuals and no two situations are exactly the same, so we are all taking slightly different paths, some of which are bumpier than others but, essentially, we are all in the same boat. Therefore, we have a unique understanding of each other’s experiences, in a way that parents of a typically hearing child may not fully comprehend. Recall the inordinate joy you felt when your child could distinguish /s/ from /sh/ or could suddenly say the /k/ sound. Or the first time they asked for milk by saying “mi”. Or (maybe after months and months of your seemingly fruitless efforts), the first time they turned around when you called their name.

When your child rips off their hearing aids thirty times a day, or can’t distinguish /d/ from /g/, or comes home from school hyperactive (or dog tired), isn’t it helpful to have someone to turn to who has been there before, who can share tips on how to face each new challenge, no matter how daunting or seemingly trivial? And on the days when you feel you simply cannot cope any more (let’s face it, we all have these days from time to time), when perhaps your family or friends don’t completely understand what it’s like to be in your shoes, isn’t it comforting to be reassured by other parents in the same boat that this is just a phase we all go through… and that, despite everything, you will soon get up again and carry on being the best mother or father you possibly can be?

There is no doubt in my mind that this kind of parent-to-parent support is invaluable. It helped me out in the turbulent early days of our daughter’s diagnosis, it is still helping me out today. And that is why I have decided, yes, I am going to start blogging about this journey, and I hope that you will join me along the way. If you too are the parent of a deaf child/children, I hope my family’s stories will help you in one way or another, and even inspire you to start sharing your own stories. Please feel free to leave comments and observations, and even questions, which I will attempt to answer according to my own personal experience as a parent of a deaf child and her hearing sibling, but not as a professional speech and language (or anything) therapist, which I am not!