Ava failed the newborn hearing screening and was diagnosed with a profound hearing loss at three weeks of age.  It was devastating for us. We were originally told that she would have to wear hearing aids but that they probably wouldn’t work because of her level of deafness. We were told she would have to rely on sign language and probably wouldn’t have normal spoken language or be able to attend a mainstream school. 

We worried about how Ava would cope in a hearing world, and felt sad that things like listening to music or chatting with someone in a shop would be beyond her reach.  I remember listening to her baby mobile play ‘Twinkle, Twinkle Little Star’ and just feeling so sad for her.

Eventually we went to the Portland Hospital, who were keen to try cochlear implants on younger children, as the US and Australia had been doing for years.  The Portland discovered that the cause of Ava’s hearing loss was Connexin-26, and that she had very straightforward sensorineural hearing loss, and that this was treatable with cochlear implants. It was at this stage when they recommended  us to Auditory Verbal UK. Ava was implanted in her right ear at age 9 months and in her left at 14 months. She started responding to sound within a few weeks, and began talking by 11 months.

Auditory Verbal UK completely transformed our experience with our daughter’s deafness. Jacqueline [Stokes] will forever be a hero to us; she was the first one who looked at us and said, “What are your dreams for your daughter?” and then told us that, with the right technology and therapy, they were completely achieveable.  And she couldn’t have been more correct.  (We still tell Ava all about how wonderful Jacqueline was, and talk all about Catherine, who taught her how to talk non-stop!)

What I think was different about AVUK were the goals they set for children with hearing loss.  I think they were and are at the forefront of understanding just how well hearing technology works when coupled with the correct kind of therapy.  Initially the idea of therapy was terrifying; I pictured some sort of medical environment and a lot of formal exercises, and it was nothing like that.  Ava so looked forward to the visits to Beicester and to be honest, so did I.  We learned ‘simple’ ways to encourage Ava to find her voice, and how to be a little more patient and wait for her to speak, but it was all done through play.  At home we didn’t have formal ‘AVUK practice’, we simply used the techniques in our everyday life and the results were extraordinary.

When Ava was not quite two, we had a visit from the local authority’s speech therapist.  By the end of her visit she kept referring to Ava as a hearing child—she was so blown away by her talking even at that point that she had a difficult time describing her as deaf.  We also got called in to see a doctor at the hospital where Ava was originally diagnosed, because they wanted to see this progress for themselves.

The outcome for Ava has been miraculous—it sounds dramatic but there is no other word.  To go from being unable to hear a jet engine taking off next to you to learning Mandarin is unbelievable, and AVUK was a huge part of that.

I clearly remember thinking, ‘please, just let her go to a mainstream school.’  That seems strange now; she’s in the top third of her class at a competitive London school.  She has won merits and distinctions in LAMDA, she plays the piano and the saxophone, she has won national maths awards and a Distinction on the English Speaking Boards.

What I am most proud of are the things that all parents are probably proud of—Ava is extremely sociable and very kind. She is a good listener and is quick to intervene if someone needs her help.  I’m proud of how confident she is in most situations, definitely braver than I am when it comes to meeting new people.  We’re moving and she is about to start a new school, and I’m not any more worried about her settling in than any parent would be; the girl could make friends with an armchair.

I also love that, whilst Ava is proud of her ‘magic ears’, often people forget she has them, or don’t know if they haven’t noticed her processors.  Her school reports make no mention of her hearing loss, nor did her LAMDA exams. Her music teachers never mention it, and we have to remind her class teachers sometimes, because, apart from sitting up front in class, Ava hasn’t had any other help.

Most of the time we take Ava’s ‘magic ears’ and communication skills for granted.  If you put her next to any nine-year-old with natural hearing, you would have a difficult time discerning which one was born profoundly deaf. But every once in a while, something will happen to remind us of how lucky she is.  When she started piano lessons at age 6 I remember asking “Ava, can you hear the difference in the notes?” She looked at me like I was crazy and said, “Of course Mummy, can’t you?” She learned ‘Twinkle Twinkle, Little Star” quite early on and that meant a lot to me; now she plays my favourite, “Fur Elise” when requested, and a little Ed Sheeran, too.

By Ava’s parents Chris and Lauren