Kirstie shares the story of her son whose deafness was not diagnosed until he was four years old due to failings with the NHS  paediatric audiology services.

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“When Tommie was born three months early at 29 weeks his condition meant he needed three operations before he was two months old. At that time his hearing was probably the last thing on our mind.

“When he had his newborn hearing screening three months after his birth we were told that the issues highlighted were probably because he was premature and we shouldn’t worry.

“We were referred back to audiology over the course of his first couple of years and each time were told that things were OK and we needn’t be concerned.

“Tommie is developmentally delayed but from aged two when he wasn’t speaking at all our concerns began to increase. Again we were told it was probably due to his premature birth and that boys could be ‘lazy’. but something did not sit right with me – I knew in my gut something was wrong.

“We had more tests with inconclusive results – by the time Tommie was three and a half he had had eight hearing tests. Finally when Tommie was four his profound hearing loss was confirmed and we felt relieved that at last we had a diagnosis.

“When he received his hearing aids I was so hopeful that things would change but it was so disappointing that there was very little difference.

“At the time Tommie was in nursery and non-verbal. We were advised that we should be applying for him to going a special educational needs school. But it was our Speech and Language Therapist whose questions and support changed things. She raised concerns about Tommie’s hearing aids being the right technology for him and suggested we seek a private hearing test.

“It was there that we found out his hearing aids were not right for his level of deafness, and that he did fit the criteria for cochlear implants whereas we had been told previously that this was not the case.

“Thanks to the intervention and referral from the private audiologist Tommie received hearing aids which were appropriate for him and we began the process of getting his cochlear implants. He was five and a half when he eventually implanted which is quite old – we know that the earlier deaf babies have hearing technology the better for them and for their brains to be able to understand what they are hearing and go on to develop spoken language.

“Through our private audiologist we also heard about Auditory Verbal therapy and Auditory Verbal UK and the support we have had has been unbelievable. Our Auditory Verbal therapist has been amazing, so supportive and understanding about Tommie’s needs and ours as a family.

“It has been and still is a lot of hard work. When Tommie’s friends were all learning to read and write he was learning to speak.

“Before his hearing technology was right for his needs he used to get so distressed – he would lash out which isn’t in his nature but, like us, he was so frustrated.

“After such a delay in getting a diagnosis, with the best hearing technology for Tommie and support, that was right for him, we can now really see the difference.

“Like us, Tommie is so determined. Developmentally he is around two years behind his age but

 he is in mainstream school with a full-time support and really flourishing alongside his friends. The school have been wonderful as have his friends who are so nurturing and supportive.

“His little sister Ada is five years younger and she helps Tommie too, for example if he doesn’t hear something or understand it – it is so humbling to watch.

“We couldn’t be prouder of Tommie. He is obsessed with Lego and so creative, he loves drawing and football and watching F1 with his Dad.

“We’re preparing for the big transition to secondary school next year, which feels daunting, but I know we’ll keep advocating for what’s best for Tommie. It’s taken us a long time to reach this point, and there’s still a journey ahead. Although there were shortcomings in his early diagnosis and the help we received at the start, we’re now fortunate to have access to excellent local services, a fantastic school community, and the transformative support from Auditory Verbal therapy that has helped Tommie find his voice — along with the ongoing guidance from the team at AVUK.

“Nobody should have to fight for access to early diagnosis and the best support for their deaf child and I hope by sharing our story things will be different for other families like us in the future.”

Kirstie – Tommie’s Mum

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Read more details about the Kingdon Review of children's hearing services: A watershed moment for paediatric audiology and early support for deaf children and AVUK’s response here.