Shoshana Mae Turner arrived 2.5 weeks early on 9 August 2018. Labour started the evening after I finished work to begin my maternity leave and nothing was ready at home – firstborn babies are always late, right? 

Shoshie failed the newborn hearing screening twice. I remember the first screening, in the early hours towards the end of our first night at the hospital. The nurse said it was probably nothing and I didn’t think about it again. The second time Shoshie failed the screening she was two weeks old and Dan was concerned as he’d noticed she hadn’t responded to a loud alarm at the hospital the day after she was born.

We went to our local SEN centre on 3 September 2018. We were in the eye of the storm, completely overwhelmed with this new life, sleeping a couple of hours a night at best, learning how to feed and care for our baby and dealing with all the usual challenges for first time parents. The hearing tests were just another appointment and it didn’t occur to me for a second that we were about to go through a life-changing experience. The tests are supposed to take up to two hours. After five hours sitting in an airless sound booth, the silence was deafening. I knew something wasn’t right. When I think back, even then when I knew something was wrong I wasn’t prepared to find out that Shoshie was profoundly deaf in both ears and that there was no way to restore her hearing. Dan came back into the room after a vape break and I was crying. I didn’t know anyone who was deaf. I couldn’t believe she hadn’t heard anything while she was in the womb and since she had been born. How had I not realised this? How was it possible that I could have no idea? I barely knew this helpless little creature lying on my lap and I was very frightened about the future for all of us, particularly for her. I felt like I’d let her down already, assuming I’d done something wrong while I was pregnant.

In the days that followed the diagnosis, I really struggled. Dan and I watched clips online of babies hearing their mums’ voices for the first time, thanks to cochlear implants and we both hoped this was an option for our family. We were told to come back two days later to repeat the tests to see if they could get any responses. They couldn’t – the profoundly deaf diagnosis was unequivocal.

The audiologist warned us of the long road ahead as we tried to discover the cause of Shoshie’s hearing loss and rule out other conditions.  In one third of cases, hearing loss is a sign of one of 400 different syndromes. Some of these syndromes are very serious. Some are life-threatening and a lot of them have associated conditions that are life-changing. The audiologist said we may never know the cause of her deafness. This was not what we needed to hear that day; we were confused, overwhelmed and frightened.

I was given a leaflet on congenital CMV – the commonest cause of hearing loss after genetics – and I spent hours online every night researching the symptoms while I was awake feeding or comforting Shoshie, convinced that this was the obvious diagnosis and it was all my fault because I was working too hard in the early months of my pregnancy, which had made me susceptible to getting ill and ultimately causing Shoshie to never be able to hear. On Friday afternoon, 10 days after they took the first swabs, we got a phone call. Shoshie tested negative for CMV.  The relief was overwhelming. Shoshie was deaf, probably just deaf, and we could handle the challenges ahead. 

In the weeks that followed the diagnosis, I couldn’t stop thinking about the silent world Shoshie inhabited. I hated the idea that she wouldn’t have access to the music that had been such a huge part of my life, and she would never hear me tell her how much I love her. I couldn’t bear to think she wouldn’t be able to go out into the world and communicate with everyone. It’s hard enough to find like-minded souls without being restricted to the one percent of the population who can sign. 

After a series of tests over a two-to-three month period, we found out that Dan and I are both carriers of Connexin 26. It’s a gene variation which means Shoshie is deaf, but she doesn’t have any other medical challenges. I convinced myself this was the cause before we got the test results, and when we did, it was a huge moment – we both wept with joy.

We knew we wanted Shoshie to hear and we were over the moon when the MRI confirmed her auditory nerve was intact and could take the implants. I pushed very hard to get the necessary tests and assessment process underway quickly so Shoshie could start learning to listen and speak. Four months ahead of schedule on 6 April 2019, and at eight months old, Shoshie had bilateral cochlear implant surgery at Guy’s and St Thomas’ Hospital in London. On 3 May 2019, her processors were activated.  

We didn’t have the ‘Hollywood moment’ we’d seen online where she could suddenly hear our voices. The technology and Shoshie’s brain started working in harmony about six weeks later at our third mapping session. She started to hear. The miracle happened. She was responding to sounds, and even better, was mimicking our speech and our noises. I’m sure almost every parent loves hearing their child say their first word. For parents of deaf children it’s far more poignant. For Dan and me, hearing Shoshie play the sound, “aa-aa-aa”, back to us was that moment.

June 2020

On the whole I only think about the fact that Shoshie’s deaf when she pulls her processors off.  This happens a few times a day when she’s trying to get a hat on or put her pants on her head (yep), and of course when we take them off for her bath as we don’t use the waterproof kit (it’s not worth the hassle) and at bedtime.  The rest of the time it barely crosses my mind.

She’s the most effervescent child I’ve ever met (not that I’m biased). She is already the life and soul of the party, she’s hilarious, entertaining and chattier than all her hearing contemporaries. 

Thanks to the incredible team at Guy’s and St. Thomas’ Hospital, cochlear implants from Cochlear, the wonderful team at Hackney Learning Trust, our highly specialist and over-qualified speech therapist Martina Curtin, and of course the incredible therapists at Auditory Verbal UK, including our auditory verbal therapists Frances Clark and Estelle Gerrett, Shoshie is ahead of her hearing peers in terms of both comprehension and speech. 

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