Our daughter, Onna, was born prematurely at 28 weeks, alongside her typically hearing twin sister, Sala. Onna passed her newborn screening. However, by about 10 months old, she had progressively but quickly lost all her hearing. Onna’s hearing loss was initially misdiagnosed but (to cut a long story short!) she was finally diagnosed with severe-profound hearing loss and Auditory Neuropathy Spectrum Disorder (ANSD). She received bilateral cochlear implants a month before her third birthday.

When Onna’s condition was first confirmed, her father and I immediately made the decision to do whatever was necessary to give her the best chance to learn to listen and speak. This involved uprooting our family, moving countries and changing our careers – but we made the decision without hesitation. Because we already knew Onna could not hear, we took the diagnosis as a call to action. Instead of becoming fixated on what might have been, we automatically looked forward to what can be and what must be done to achieve the best outcome. Having lived for so many years in a part of the world where there is zero support for deaf children, we felt grateful to be able to access such an incredible support network for Onna in the UK. Things may not be perfect here, but we are so fortunate compared with most other countries around the world.

We heard about Auditory Verbal UK through Onna’s teacher of the deaf. After an initial phone call with Emma (who went on to become Onna’s lead therapist), we attended a trial session shortly after Onna’s implants were activated and Onna joined the AVUK programme two months later. Each fortnightly session included a four to five hour round trip but every moment was worth it. These sessions trained us as Onna’s parents to integrate AVT strategies into our everyday life at home. Clear achievable targets meant we had personalised goals for Onna and regular measures of success, which kept us looking forwards, even during the tough times!

AVUK’s approach gave us tremendous hope but also a grounding in reality and the tools to give Onna the best chance possible to learn to listen and speak.

Initially, Onna’s progress was slower than expected, possibly due to the dual challenges of her late diagnosis and ANSD (as well as some technical problems with her left implant), but we could tell she was moving forwards and, while we had to hold our nerve at times, we were convinced that it was just a matter of time and hard work before Onna would  start making a breakthrough.

After about 18-20 months of Auditory Verbal Therapy, Onna seemed to turn a corner and from then on, her progress has accelerated exponentially. She is six years old now, and while we no longer attend AVUK, we continue to use Auditory Verbal Therapy techniques at home – the training we received during our time with AVUK has made this second nature to us.

The importance of a team effort cannot be underestimated. Since starting school (where she has an extremely supportive, inclusive environment), Onna has received excellent support from her NHS speech and language therapist, her teacher of the deaf and the council’s SEND services, not to mention the Emmeline Centre for Cochlear Implants at Addenbrooke’s Hospital. All this support combined with AVT has enabled Onna to thrive. Onna’s current rate of progress with her speech and language, but also overall as a person, is faster now than we have ever seen, and we are convinced much of this is due to the strong foundation which was laid with patience, warmth and professionalism by the AVUK team.

Onna attends mainstream school alongside her twin sister. She has a one-to-one teaching assistant and although she is still speech delayed compared with her peers, she is chatty, engaged with her learning, reading well, making friends, and loving sports of all kinds from football and cycling to swimming and gymnastics. She is fully involved with every aspect of both school and home life – all in all, she is doing remarkably well and, most importantly of all, she is a happy, curious, confident and vivacious child.

I passionately believe that deaf children deserve the same opportunities in life as their hearing peers. I feel that the inevitable and necessary hard work early on will pay off for these amazing children in the long term. I maintain that, with the miracles of modern technology combined with strong teamwork (between the children, their families, therapists, teachers of the deaf, school teachers and audiologists), deaf children can reach for the stars – it is not for us to set limits on what they can achieve but rather to give them the platform they need to learn, grow, and attain their goals alongside their hearing peers. 

I believe that AVUK’s aspirational and personalised approach can literally be life-changing for deaf children and their families and would like to see Auditory Verbal Therapy become widely available across the UK, as it is in many other countries around the world.