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Alexa's microtia diagnosis

Published Date: 25 Jun 2020

Mother and father with two young daughters

Alexa (2) was diagnosed with bilateral, profound sensorineural deafness at the age of one month. I remember that appointment as if it was yesterday. Alexa was born with microtia and atresia, so the audiologist decided they didn’t want to test her as she needed a special kind of testing, but due to it being around Christmas this was delayed until January 2018.

When Alexa was a newborn, I remember her being so content and never really stirring to noises or being that upset if the smoke alarm went off - the smoke alarm sensor was stupidly put in the kitchen above the cooker! My partner and I used to be so happy that we had such a content child and we were so proud of her.

Then the letter came through with her newborn hearing test appointment. I think you always have a hunch when something isn’t quite right. I remember talking to a friend the evening before saying I thought she was deaf but they just brushed it off saying I was overreacting and that Alexa was just a generally quiet and unfazed baby.

They took us into the room where they do the test and it wasn’t meant to take any longer than about 20 minutes but it felt like we were in there forever. All of a sudden the audiologist stopped and said she’d be back with some leaflets in a minute. Now every parent who has had a child born with complications knows that this isn’t the best news and you’re about to be told something that you’re going to need some more information or support on – I’m an expert on this now!

I looked at Kia and said “she’s deaf,” and he looked back at me as if I was going crazy or I was some sort of mind reader, but I just knew. So in she came and said “I’m sorry to tell you but your child is profoundly deaf.” That  day was numbing, not because our daughter needed more help than others, but because she’d never heard us telling her that we love her, the sound of laughter from her sister when they are playing or the lullabies we used to sing to her when she wasn’t settling. Did she know that she was one of the most loved babies that there ever could be? And the most important question of all, was it our fault and why our lovely little baby?  

Then the journey began. When you get told your child’s deaf you don’t think any further than just a hearing aid? Or so I didn’t. You don’t know about the amount of appointments, the hearing aid mould fittings, Ear, Nose and Throat (ENT) meetings, the Teacher of the Deaf. We were here, there and everywhere at the beginning. I’ll go into the hearing aid journey and our next steps in my next blog as that was just a nightmare in itself with a baby who learnt to pull things out as quickly as she learnt to roll over!

Kayleigh

Kayleigh lives with her partner Kia and their two daughters Brooke (7) and Alexa (2). She is currently studying part-time with the Open University doing Criminology and Forensic Psychology as well as being a full-time carer to Alexa. Alexa, who has microtia and atresia, is bilaterally profoundly deaf and currently wears one cochlear implant. She’ll soon be having an auditory brainstem implant fitted due to the cochlear implant not being successful. They’re all learning British Sign Language and supporting each other through Alexa’s journey.