Thursday 18 May 2017

Ellie's Story. Auditory Neuropathy. #DeafAwarenessWeek

Looking at Ellie my 9 year old you would never guess she is deaf in one ear....She just deals with it.

This week is Deaf Awareness Week and I thought I couldn't let it pass without writing something.....Sharing Ellie's story.

Ellie was born with some hearing loss in her right ear. It was discovered when we took her for the newborn hearing test....For a few years we were at the hospital every six months for more tests. They couldn't get a clear result. 

We went through all the baby tests where she had the probe things put in her ears....Then the toddler ones where she had to wear headphones and they would play a noise in them and the Audiology people would note down if she responded....

Ellie was about 4 years old she was diagnosed with Auditory Neuropathy.....A pretty rare type of hearing loss where the cochlea and all the ear seems to work but there is something wrong with how the nerves work....Basically all the ear works, the nerves going to the brain work there is just a loose connection somewhere in the middle!.....My girl really does have a screw loose....hehehe

When she was a toddler she had 95% hearing loss in her right ear and it progressed....By 2014 she was totally deaf in that ear....

The specialists have mentioned to us that they could do tests....MRI scans to see where the nerves are not working and maybe find out why.....It would help with the research of the condition but the results would not make a difference to Ellie...There is no fix for her ear so I have always said no.

If she wants to be a guinea pig when she is older she can be but I'm not putting my girl through an unnecessary medical procedure! Sorry! She has had her fair share of hospital visits and stays with the problem with her eyes, ears and her heart.....If there was a chance they could restore the hearing I would have said yes but not just to aid their research.....

We have got to the point now where we only go to the hospital once every couple of years just to make sure her good ear isn't losing any of it's hearing.....It isn't so far. Phew!

There are times where Ellie struggles at school especially if there is a lot of background noise but the school is pretty good now. We did have a few issues over the years, especially at the start of a new school year where her medical information was not passed on.....I complained and they have been brilliant ever since. She is sat nearest the teacher and they make sure she hears and understands everything.

There are over 45,000 deaf children living in the UK.
90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person.
Four babies are born deaf every day.
Research suggests that more than 77% of school-aged deaf children in the UK attend mainstream schools where is no specialist provision and in which they may be the only deaf child enrolled.
Deafness is not a learning disability. There is no reason why the majority of deaf children should achieve any less than hearing children.

Ellie doesn't let her deafness hold her back....To Ellie being deaf is normal. There are times when she plays on it....She only has to stick her finger in one ear when she doesn't want to listen to me and pretends she hasn't heard me when I ask her to do something. Cheeky so and so. hehehe


  1. We have quite a few deaf children in our school so we've had training to know about simple things we can do to help them, especially the ones that lip read - tying back long hair, not dimming the lights when using the white board, not speaking when writing on the board, ... all obvious really but you don't always think about it until someone points it out ! Glad to hear Ellie doesn't let it bother her ... and can even turn it to her advantage sometimes - heehee ! xxx

    1. We had quite a few issues with the school a few years ago. The teachers didn't have the training. They were clued up eventually. It sounds like your school is brilliant. Thank you x

  2. Glad to hear that Ellie's hearing is still good in her other ear. Her putting one finger in her ear when she doesn't want to listen made me chuckle. I don't blame you for not putting her through an unnecessary procedure if it won't help restore her hearing. As you say though, it is normal for her and it's good that it doesn't hold her back x

    1. She is a little devil at times. hehehe
      I certainly doesn't hold her back. Thank you x