Little Aeris and our hearing loss journey so far

At 9.01 am on Sunday, January 14th 2018, weighing 5lbs 15oz, my beautiful baby girl, Aeris, made a dramatic entry into the world via an emergency cesarean after my placenta abrupted and I began to haemorrhage. Like her brother Isaac who was born by cesarean 15 months earlier (he was a breech baby), Aeris failed the newborn hearing screening in the hospital. I dismissed this as normal due to her cesarean birth and expected a follow up appointment at the Freeman Hospital in Newcastle.

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Two weeks later I happily took Aeris for her appointment at the hospital, but she was hungry and agitated. The testing wasn’t very successful; ideally the baby needs to be asleep, quiet and still. So we booked yet another appointment for following week. This time I wasn’t so blase about it and had a niggling feeling something wasn’t quite right. Not because of anything I saw in Aeris, she was an alert and happy newborn, feeding and sleeping well, but because she didn’t fly through the re-test as Isaac did.

On Friday, February 9th 2018 we return for more testing and the audiologist gave us the devastating news that our little girl wasn’t responding to any of the testing and had a severe hearing loss.

The bottom dropped out of my world.

Aeris’ life flashed before my eyes and everything I’d imagined for her was being ripped away. My baby can’t hear the world around her. How was she going to live the full and wonderful life we’d planned for her? Was this my fault? What did I do that caused her not to be able to hear? Why had this happened to my baby? Why?

We were devastated.

We were immediately referred to The Great North Children’s Hospital at the Royal Victoria Infirmary and within the hour Aeris was seen by an infectious diseases consultant and test were done for a virus babies can contract during pregnancy called cytomegalovirus or CMV (thankfully this came back negative a couple of weeks later). We were also referred to a local authority service called sensory support Another hearing test appointment was made for two weeks later to test the next two frequencies. They were the longest two weeks of my life, not knowing whether my newborn daughter could hear anything at all. I spent most of it crying.

The following week a lady called Ginny from sensory support came to visit us. Ginny is a Teacher of the Deaf and explained that she is here to be support for our family and to support Aeris’ development. She couldn’t have been any nicer or supportive of us than if we’d known her for years not just a few moments.

We returned to the Freeman hospital for Aeris’ third hearing test and were given the overwhelming news that the tests showed she was responding to sounds at 85 decibels at the next two frequencies. Impressions of her ears were promptly taken and an appointment for the following week was made to fit her with some tiny hearing aids.

She was fitted with some pink Phonak sky-v hearing aids on March 1st and we filmed her wonderful little reaction.

 

Here we are almost 6 months later, Aeris is 7 months old and thriving. She is the happiest little girl around. She’s sitting up, giggling, babbling and starting to copy sounds and actions and desperate to be on the move. She’s had a hearing aid upgrade to the super power aids, genetic tests (all clear), an MRI (perfect) and our next hearing test for the lower frequencies is scheduled for the beginning of September. We’re learning sign language to support her speech development and we sing and play with noise and music. Aeris’ audiologist, Kate, from the Freeman Hospital and Ginny, her teacher of the deaf have both been brilliant support, with all the help and advice we could ask for.

I’m still sad sometimes that Aeris has this extra challenge to contend with and her speech and language development may not be as straight forward as it could have been, but every day she amazes me with her cheerful disposition and her wonderful little personality.

She’s just perfect.

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