Finding out Ava is deaf

Hi, I'm Nicola. My daughter Ava Joan is 4 and profoundly deaf. She has auditory neuropath spectrum disorder. She also has no right main auditory nerve and a very thin left auditory nerve, so she will never access sound.

I found out she was deaf when she failed her newborn hearing screening. We were sent for further testing, but she failed those too, so we were sent on to audiology. It all happened really fast, within 6 weeks of her being born.

A Teacher of the Deaf, Liz, came around weekly. I have to give her massive credit as she was amazing. She prepared me for my journey with Ava. She also arranged for another excellent lady, Sarah, to work with us on signing as she knew British Sign Language (BSL).

Ava underwent testing to see if cochlear implants might be suitable for her. Call it mother's intuition, but I just knew that Ava wouldn't be a candidate for them. I did my own little tests where I would bang things together next to her and shout. She didn't flinch or respond in any way.

After the MRI scan, I was told of her missing and extremely thin auditory nerves, and that nothing would help Ava access sound. I cried, which I thought was strange. For one thing, I already knew and felt that would be the case. For another, I wasn't bothered by the fact Ava was deaf—she is a unique little girl. My fear came from the fact that I didn't know BSL, and my own ignorance of never having taken the time to learn it when there are plenty of other people who rely on BSL as their main language.

My anxiety came from the fear of never speaking or engaging in conversation with my daughter, not being able to understand and help her with anything in life, and what the future would be like for her. I felt scared.

We've now been on our BSL journey for 4 years, and I have to honestly say we're getting there slowly. I think we use a mixture of BSL and signs that are my own creation, but it's falling into place.

She also has a really strong support system in the school she attends, which is a school for deaf children. They are supporting her massively in a way I wouldn't be able to do for her at this point. We have a long journey learning our BSL together. Ava is amazing. She's a bright, clever and confident little girl, and we're working together to get to where we need to be.

For any other parent in my situation, I'd like to say that it's all fine in the end. You stress, worry, and most of the time wing it, but it's an amazing journey with a bond that's so strong.