Silent Struggles-A families fight for sound.

My best friend had her second baby five weeks after my first daughter. We had grown up together, been each others bridesmaids, been pregnant together, and now we would be mums together. But her baby was blossoming. Her child was starting to make noises, talking, and moving across the floor. Mine wasn’t. I was shocked to see how much more advanced her baby was. My baby was a happy wee soul, and I hadn’t had any worries until now. Every time I saw them, the divide grew bigger. Every time she proudly showed a new word or trick he could do, it felt like a blow. It was hard to feel this way; I wanted to be happy for her, but my stomach lurched, and fear set in. Something was wrong.

I asked the health visitor and was told not to worry—it was all perfectly normal. The months went on, and she still wasn’t sitting when all the children her age were. She wasn’t making much sound, just high-pitched squeals. She wasn’t responding to noise; occasionally, she would turn to loud bang, or at least I thought she had, but at other times, she didn’t. We spent so much time sneaking up behind her, clapping or shouting her name in the hope of getting a reaction—mostly, she didn’t respond. By the time her 18-month check came around, I was desperate. The doctor confirmed what we already suspected; she didn’t pass the hearing test, and a referral to audiology was made. I felt a mixture of emotions—relief that a professional had taken it seriously, but also fear and denial.

After many appointments, she was to go under anaesthetic so they could properly test her hearing. Our questions would finally be answered. It was what we wanted but also what we were most afraid of. Afterwards the doctor came out and used words like “definitely no sound getting in,” “hearing moulds,” and “hearing aids.” It didn’t seem clear to us as we left that day, unsure of what he meant. As we passed the audiology desk, a lady we had met earlier stopped us. She already knew the news and used the word “deaf.” She even mentioned applying for Disability Living Allowance. It was surreal, but oddly I was thankful she used the actual words, it helped us process the news. We drove home in silence, a silence only to familiar to our child.

When we got home, we told friends and family. Saying those words out loud was brutal. “She is deaf,” I would say, answering all the well-meaning questions on automatic pilot. “No, I don’t know what happens now.” “Yes, we are okay.” Some friends called with warm wishes, while others stayed away. I understood—what could they say? Nothing would help. Those days felt like we were walking through treacle. Our little girl was still the same, but now, every time I sang to her or spoke to her, I knew she wasn’t hearing me, and that was heartbreaking. I started to see the word differently through her silent world. My parents were really worried this would mean she would be sent away as this is what used to happen years ago but I assured them that wouldn’t happen. My mind often wandered to a girl who was deaf at my school. She had hearing aids and seemed to have done okay. I found myself being curious about what had happened to her and where she was now .

We pinned all our hopes on the hearing aids. It took weeks to get the hearing moulds back which wasn’t ideal as her ears would grow and they likely wouldn’t fit well . When the day finally came, we were so hopeful. The audiologist came in with the hearing aids, tiny brown contraptions that hurt my heart to see, but I hoped they would work. Oblivious to what was going on, she pulled them straight out. We tried again and again, but she hated them. There was no sign she was hearing anything, and it quickly became clear the hearing aids weren’t staying in. The disappointment was crushing. At home, I kept trying to put them in, but she always pulled them out, and each time, it became more upsetting for us all going through this day after day. Fighting her, holding her while she screamed, squashing these hearing aids into her ears for her to grab them and throw them on the floor. I was completely overwhelmed. Until one afternoon Steven appeared home early, he walked in on us both screaming and crying, something in his gut had told him he was needed. He held me as I sobbed. From that moment on we decided to stop forcing the hearing aids. She wasn’t benefiting from them, and it wasn’t helping any of us. The relief was immense, but so was the sadness. Where did that leave us? How would she ever communicate? I’d heard about cochlear implants but didn’t know much. We resolved to find out more.

The next step was for her to have an audiogram. To be candidate she would need to have a hearing loss that was severe to profound. It was odd to be hopeful she had little no hearing. But the test showed her to be profoundly deaf. It explained why the hearing aids hadn’t worked. We could stop feeling guilty about not using them. There was new hope. We waited for a referral to Crosshouse Hospital and started learning basic sign language with help from our deaf teacher, Anne. She was a godsend, visiting weekly and bringing light to those dark days.

We made the decision to go ahead with the implant after many appointments and assurances from us that my now pregnant state and imminent new arrival wouldn’t be an issue. Once we convinced them we were absolutely up for the task, they agreed to put us on the list, and a decision would be made over the coming months. S was one of the youngest to have been considered, but the news was that the younger the implant could be done, the better the chances of her developing natural speach. There was a huge waiting list. I decided on a charm offensive and phoned the office every single week for months, as friendly as I could be, asking when we might hear, making the biggest nuisance of myself that I could.

Finally, after months of hoping and waiting, we got the news that she had been selected. It was celebrations and elation all around. She was to have the operation the day after her 2nd birthday. It was terrifying but exciting, and everything we wanted. But the fear of her going under a long anesthetic, having part of her skull chiseled out for the implant, and the risk of facial paralysis was not lost on us. At this point, I was eight months pregnant, with a huge belly. The day before the operation was chaos. We were having a party at the house with friends and family for S’s 2nd birthday, which was a welcome distraction. I felt like death. In the photos from that day, I look like death. But there was an odd feeling in the air of change and hope as I watched S bossing people around in her silent way, pointing and telling us where to sit and what to do, wondering what this next phase would hold for us. It felt good to have all our loved ones around us at this time especially.

Those days in the hospital were long and all a bit of a blur. My parents were with us, and Steven was staying with them in a flat on the hospital grounds. I was staying with S in her hospital room on a camp bed. On the day of the operation, after I had gone with her in my scrubs and held her as they gave her the sedative, she drifted off to sleep, and they took her to the theatre. The four of us set up a vigil outside the elevator doors. It felt endless. The operation took over four hours, and every time those doors opened, we all jumped out of our seats, waiting, pacing, hoping. Finally, the nurse came through those doors, and S’s crying was music to my ears, her curly hair tufting out of the top of the bandages. I was so happy to see both sides of her face screwed up in tears, no paralysis. She was groggy and in pain, but it was done.

It was going to be a long night. Every time I got her settled, the nurses came in to check on her, and she woke again. When she did sleep, I couldn’t sleep. The folding bed was so uncomfortable, and my very pregnant body wasn’t managing it well. I was emotional and overwhelmed; all the feelings I had been holding back were flooding me in the relief. I was feeling so sorry for myself, and the thought of Steven and my Mum and Dad together in the flat celebrating just made it worse. The rain was pounding the windows as the storm raged outside. I heard a phone ring in the nurse’s station. I could tell it was Steven calling to check in, and the nurse assuring him that we were both fine and asleep. But I wasn’t fine. I wanted to scream. There were no mobile phones to text back then, so I sat in my overwhelm, taking big gulps of air as I sobbed silently, not wanting to wake my sleeping child. I felt so alone, and it all felt too much, too big.

A few minutes later, I heard someone come running into the ward, which was odd so late at night, and some mumbled voices. In came a soaking wet, out-of-breath Steven. He had just had a feeling that he should come. My folks had told him not to be silly, the nurse had said everything was fine, but he just knew. My hero yet again. He lay behind me on that tiny camp bed and engulfed me in his big strong arms, and I’ve never felt comfort like it, the two of us squashed in together as I drifted off to sleep. The four of us in that little room—us on the bed, S in the cot, and G unborn, curled up inside of me. Who knew what lay ahead, but for now, we were all safe.

The implant wasn’t switched on for six weeks. It felt like endless waiting once again.

Visitors and well-wishers came and went which was lovely and eventually it was her bed time. I lay her down but as was often the case she didn’t settle, I kept laying her down and waiting for her to eventually quieten down but she was more upset that usual, it was dark and I couldn’t see well, something wasn’t right, she was crying and crying and moving her head franticly from side to side. I turned on the lights in the hallway and was met with what felt like a horror scene. She had moved her head so much that she had taken the big bandage that was on top her head clean off. We were met with what looked like the results of a car accident. I was filled with terror, screaming for Steven to help and that something is really wrong, her half shaved head, her little white scalp with big black stitches from top to bottom, all the way  down behind her ear to bellow her ear lobe.  Half of her beautiful curly brown hair missing.  Crusty scabs were forming around the stitches and her tinny hands were clawing at them, a few with fresh blood were opening up. I was convinced in that moment that she was going rip the implant right out.  Steven just went to pieces, I hadn’t ever seen him this way before, he was always the stronger calmer one but this was just too much. He was pacing in and out of the room, no idea what to do. Seeing his baby in this state must have triggered something, but we had no choice. Picking her up I put her in his arms and told him to sit down, she was squirming and screaming, “Hold her still” I ordered, as I tried to put the bandage back on, but as much as he tried she kept squirming and getting her arms free, those chubby little fingers and tiny razor like nails clawing at the stiches. I could hear the Alfred Hitchcock music playing the in my ears. Im screaming at him to hold her tighter, “We just have to to do this”. “Oh my god, oh Jesus, I’m trying, I’m trying.” He replied. But it was pointless; I still couldn’t get the bandage on. Both of us were in bitts, each as terrified as the other. We sat the loose useless bandage on her little stitched together head and held it there while we tried to come up with a plan. We opted to get her in the car and get to the nearest hospital, Cross house hospital where she had had the procedure was 2 hours away so that wasn’t and option. We ran out and bundled her in the car seat, me in the back with her holding her hands so that she couldn’t get at the wound and her screaming.  We were told later that the young kids out playing that had seen us in the  Street had told everyone that the top of her head had come off and that we were rushing her to hospital, it was funny afterwards but in the moment that was how it had felt to us too. we got into the car straight to the hospital but  they didn’t know what to do with it either, a young Doctor who had never even seen a cochlear implant tried to bandage it, S was  screaming and yelling, as I’m holding her she’s tossing and turning her head, he managed a loose bandage of sorts and as I left he and I both knew that  it was instantly going to come off. Me and Steven stood outside the hospital at a loss, what could we do? I needed my Mum. I instantly felt better just beeing there, S seemed to calm down too.  Me and my Mum slowly started to unravel the mess of loose bandages, there was miles of the stuff, Steven couldn’t watch, he had to go out of the room.  S was very calm suddenly, she let us remove them all and she sat there on my knee almost in a trance, I got a brush and she allowed me to gently brush the half head of matted  bloody hair all knotted up from being in the bandage for days, she was so relaxed. We got a chance to really look at it. It wasn’t as bad as it looked, yes it was big and ugly and hard to see but at closer inspection it was healing, it was clean and no stitches had actually been burst. I shouted on Steven to come and see but he didn’t want to look. She sat there as calm as could be in my arms as  my mum calmly bandaged her head, much better than it had been before and we found a hat that tied under her chin. We put a hat like this on head for six weeks, day and night, in bed in the bath constantly. it only came off when the bandages needed changed which we routinely did, me and my mum, calmly once a week. letting the air get at it and cleaning and brushing her hair, rebadging and adding a clean hat.

The weeks passed as her curls began to grow back in We had big expectations of what this switch on would be like. This was before we had the internet filled with all of these cute tear-jerking videos of kids hearing for the first time, but you better believe that’s what we were expecting. So off we went, our Deaf teacher had come along as she was keen to see what a switch on was like, she had never experienced it, we loved  her and were happy to have her with us witnessing this miracle that was about to happen. We set of full of anticipation and excitement, this was it, this was the day it was all going to change.

At the hospital they ushered into the audiology room, after the usual pleasantries and interest in the birth of the baby and how S was getting on, we got on with it. Her outer part of the implant was at this point attached to a big thick long cable that connected to the PC, the placed it on her ear and switched on the sound, we held our breath, nothing happened, we started talking and saying her name, she looked unimpressed and pulled it straight off her head. My stomach hit the floor. We tried again and again, every time she wriggled and squirmed and pulled it straight off. She hated the cable and didn’t want it touching her, I tried to hold her so she could grab at it but it was pointless, she was in meltdown and I felt like I was haemorrhaging, I had only days before given birth and here I am wrestling on the floor with a hysterical 2 year old while everyone watched, I was sure the blood was seeping out of me (it wasn’t actually) but I didn’t care, we kept trying, Steven too, distracting her, bribing her, forcing her. But it was no use. Eventually we were sent away with the implant and a box of many small pieces and bitts and lots of instructions, none of which I had taken in, I hoped steven had, he hadn’t either. Anne was with us, I was sure at this point she would rather have been anywhere else, she tried to cajole us with kind words and comfort of it just takes time etc. But me and Steven couldn’t even really look at each other, the reality was to horrible to face. Into the car we got, S still in her silent world and us all driving in silence ourselves lost in our own fears and thoughts. When we got home my parents were waiting to hear all about it but it didn’t take long for them to understand things had not gone as hoped. Anne made her goodbyes and am sure was so glad to get away. Years later she told me that she would never forget the sight of us that day, “those 2 desperate parents “she had called us looking back with humour and the gift of hindsight.

Over the next few days nothing really changed. She wouldn’t wear the implant, all it seemed to do was upset her and she would pull it off.  We were both heartbroken, all our hopes had been on this working. Where did this leave us? We were trying to be positive.  I kept thinking, maybe when she’s older, she might not want now but it will always be in there, ready waiting, if she ever changes her mind. I went into fix it mode, there had to be something we could do. As she couldn’t stand the earpiece behind her ear, we opted to stick this part to the coil with double sided sticky tape.  In the hope that we could encourage her to wear it this way. We made sure that she was always wearing tops with hoods, this way the implant could sit in there still wired to the body worn processor and whenever she was distracted we could try to pop it on to the magnet in her skull just under her hair, My Mum fashioned a little mini back pack that fit snuggly around the processor made from old bra straps and this was worn under her clothes, she seemed ok with this. It was supposed to be worn on a bum bag around her waist, but she had made her feelings about this very clear as she went into meltdown every time we tried this. Off we would  go to the park, every time she was busy one of us would sidle up behind her and pop the coil on, holding our breath, trying to distract her and keep her focus, each time it would stay on for a few minutes and then she would realise it was there and off it would come, dangle there on this little wire, we got used to popping it back in the hood till the next opportunity arose. We would bribe her with sweets or play games to create these windows of opportunities.  Every moment it was on was a small win. Slowly slowly, more and more, the time it stayed in place before being grabbed a thrown off got longer. It just became the norm; I began to feel it would always be this way. One day Steven came home from a visit to the park and casually announced that she hadn’t taken it off the whole time they had been out. I couldn’t believe it. What progress. She started wearing it more when we were out but still not so much at home. All the while there were still no signs of hearing or speach, we often wondered was this device even working.

We had started to keep a list of all the sounds that she was making, not words but she has started to make what the speech therapists said were preverbal noises. We were not convinced. Too afraid at this stage to get our hope up anymore. I will never forget the first moments I realised that the implant was working. She was sitting on the kitchen window sill; she loved playing with baby wipes. I was videoing her sounds as she played and to get her attention I instinctively said her name as I always did. She turned and looked at me. The world stood still. I held my breath. Had that really just happened? Dare I believe? Dare I hope? For 2 years we had shouted on her and jumped about behind her making noises trying to get her to turn to us, so many times we thought she had, only to learn that she had actually seen our reflection in the TV or felt the vibration of our feet behind her. So, I waited until she was distracted by the wipes again and standing very still, I said her name again. Again she turned to look at me. I gasped, hand over my face in disbelief, my heart pounding, I wanted to hug her and kiss and throw her around, but I was afraid to do anything in case I jinxed it. We continued doing this over and over, I cannot tell you how many times I had to see this with my own eyes for it to be real. Pure joy is the only word for how it felt. Elation. I phoned Steven to tell him, I was so excited, but he, just like me was unsure. “Hmm, really? We have thought this so many times before, was it not maybe just a coincidence?” I understood his fear. “No, I’m telling you, she has done it over and over all afternoon consistently, I’ve even got it on video”. He came of the call pretending to believe me, not wanting to dampen my excitement but I knew he didn’t believe it. I couldn’t wait for him to come home.

When he came in I could see his apprehension, afraid to ask. I tried to hide my excitement, I knew he had to see it for himself, and I too was afraid it might not happen again, maybe it was a coincidence. I was making dinner and watching from the kitchen window as he went out with her into the garden to play, she ran off for the ball and I saw him tentatively call her name, I was willing her to respond and she did, she stopped and turned and looked at him. He threw the ball again and the same thing happened. The slowest biggest smile started across his face, I was beaming, tears in my eyes, he looked up and saw me watching, could this really be happening. It certainly seemed like it might be.

I can’t really remember where it came from, I think it was a gift, but someone gave us a fluffy cuddly dog toy.  I was holding S on my hip and the dog in my hand as if it was looking at us. This wasn’t a conscious thing, just a random moment of play. I made to doggy nod as it said “woof woof”, She looked at the dog, she looked at me, she pursed her little pink lips and made an “oo oo” noise. Wow. I did it again, the dog nodded in time to the “woof woof” and again she looked to me, she looked to the dog, and again she said “oo oo”. It was the most beautiful thing I had ever heard. She was absolutely trying to say “woof woof and she understood that this sound was connected to this dog.  I was the first time I seen her brain connect with a sound and respond to the south and make a noise. I did it over and over again. Throwing her about in jubilation. But still the doubts were there, was this really what I thought it was, dare I believe?  I thought I would push it a little further and put the dog away in the toy box in the other room.  I came back to her and looking her square in the face said to her, while gesturing confusion “ Where is the woof woof?”. I held my breath. She stopped what she was doing and went into the toy room, there was lots of banging about and out she came dragging the doggy behind.  This was such a euphoric moment in my life, but I was on my own with 2 small children who had no idea what was going on. I got on the phone to Steven, this time he seemed to allow himself to get excited. I couldn’t wait till he come to show him. And when he did, she did it again perfectly. This was huge turning point for us. The implant was working, and her brain was starting to process sound. This was to become our party piece at every loved one’s home we visited for some time, every time the dog being hidden in more elaborate places where is the woof woof?” off she would go and find it, even when we said it without her being able to see our faces and lip-reading. My Mum bought herself a similar dog toy and when she looked after kids, she “woof woofed” all around the house with it.

S making this sound will forever be one of the most joyous moments of my life up there with the birth of my children, watching G graduate and seeing S win Special Olympics medals. To see her make that connection, for her to know that Woof meant something showed me that my child had some understanding and had the capacity to learn. Yes, it was going to be a long road but there was possibility. There was a glimmer of light at the end of this long, long tunnel.

She did go on over time to learn more words and sounds and string those together more and more each day. Words became sentences. Sentences became stories. Wearing her implant everyday, her hearing capacity is now amazing. She talks constantly and her hearing loss is the least of her issues.

Read the next blog-A siblings journey