Matilda's Journey
By Holly Bryant
Hi! I’m Holly, mum to Matilda who is 5 years old, profoundly deaf and wears bilateral cochlear implants. Matilda was born in 2020 at home, amid COVID. We had a roller coaster ride in getting Matilda implanted. Matilda didn’t pass the newborn hearing screening. It seemed that every hearing test we went to, it was unclear what level of deafness she had. To start, Matilda was diagnosed with a unilateral profound left sided deafness, but we were told her right ear would compensate so Matilda wasn’t fitted with hearing aids until she was 18 months old. This was after we were put in touch with Teresa McCabe, our wonderful Teacher of the Deaf. Teresa by chance happened to be visiting the school where my mum worked at the time. My mum started chatting to Teresa who suggested that it didn’t sound right that Matilda had been left unaided all this time, so then we finally started our journey for Matilda being aided and then eventually implanted.
​As we have no history of deafness in our families, we tried to find out the reason why. After some medical investigations and 3 years later, we were given the diagnosis of CMV (cytomegalovirus) as the cause of deafness. One of the traits of CMV is deteriorating hearing loss. Every hearing test we went to, Matilda’s hearing had deteriorated that little bit more. Her hearing aids were getting bigger and more powerful but were no longer doing much for her; it was a race we were not winning. This process was hard to face every 3 months that Matilda was tested, and we found that there were no stories online that were like Matilda’s case. We got to the point where we were just waiting for Matilda to fall into the criteria to be referred for cochlear implants. We knew it was coming but didn’t know how long it would take. It felt frustrating that we were holding our little girl back from being able to access sounds when we knew the inevitable was coming. In December 2022, Matilda’s deafness had progressed to a bilateral sensorineural hearing loss; profound in her left and severe-profound in her right.
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We were finally referred to USAIS for assessment and it was agreed that Matilda did meet the criteria. After what felt like another long year of appointments and scans, Matilda underwent the operation in February 2024 and was activated a month later, aged 3.5 years. The operation went well and her recovery was straightforward. Activation day didn’t bring the momentous moments you might see on YouTube, nor did Matilda dislike being switched on. So, we were very happy with how it went! Matilda said her first words “mummy” and “daddy” on a September evening in 2024, at the beach, the sun was setting, the tears were instant!
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Due to Matilda’s late start in accessing sounds, it felt like she had more catching up to do than most. Matilda started attending The Elizabeth Foundation in September 2023 one day a week. It is an amazing specialist deaf pre-school in Portsmouth. At the start I was worried about making the journey once a week, but it was the best decision we could make for Matilda and our family. Matilda absolutely thrived at The Elizabeth Foundation, it felt like a home from home. Every member of staff understood and speaking with other families really helped. With the help of my parents, Matilda was able to attend a second day each week for the last year of pre-school. This really set her up well for starting school.
We were often told that Matilda’s progression at The Elizabeth Foundation was the best they had seen. She started with hearing aids, not recognising her own name and she finished 2 years later being able to say 3-4 word sentences. Even as a parent, we would suddenly hear Matilda coming out with a new word or sound or reacting to environmental sounds in a way that only the previous week had not happened. Thanks to TEF and our TOD Teresa, Matilda really did shine and put a lot of our worries to rest about how she would cope at school.
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Matilda started school recently in September 2025. She has an EHCP enabling 1:1 help and has fortnightly visits from Teresa. The school have been really supportive and are aware when Matilda needs a listening break or extra support. Matilda is very tired by the end the week, but she appears to love school and has made friends. It is hard to not compare your child to others, especially when attending mainstream and having an older son who is hearing. But when I remind myself that Matilda has the listening age of a 2-year-old, she is above and beyond where we thought we’d be right now. Matilda is now learning to read, although we are met with challenges in doing this that her peers and her brother didn’t face, it just reminds me how resilient Matilda is.
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We were told about DDCS towards the end of 2022. We attended the Christmas Party and it was lovely to see so many families come together all due to the same reason. It made us realise that we were certainly not alone in this unknown world we had found ourselves in. It was, and still is, so wonderful to see the older children who have made friends through DDCS. Whilst Matilda is still young, we are confident that DDCS will bring Matilda many years of friendship ahead with children just like her. We are aware that the mainstream school she attends has no real deaf presence so it is important for her to meet with other children who she can relate to. I did a year studying BSL and would love to continue that to a greater level and continue to teach Matilda as it is such a beautiful language and is a great communication tool for when Matilda prefers to not wear her processors after a busy day.
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When I think back to that initial diagnosis and every hearing test saying that Matilda’s hearing has deteriorated again, it felt like grief. Grieving the life you think your child will miss out on. The guilt, did I do something wrong during pregnancy? I remember a lot of tears. There are still occasional tears but also so much more hope that Matilda will lead a very happy and fulfilled life. Being deaf will not hold her back! We are excited to see what the future holds. Matilda was the first deaf person we met, and I do feel grateful that we have had our eyes opened to a new world we previously knew little about. As a family we have more compassion and Matilda shows such empathy to her peers. That’s not a quality that you can teach easily but you learn it from experience, and she has been through a lot in such a short time. As amazing as the support for Matilda has been, we must give credit to her, she is so strong willed, social and determined and that has driven her development so rapidly. There is still a long way to go but it wonderful seeing her personality develop now she is at school.
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