Year implanted: 2017
Age when implanted: 10 months
Age when piece written: 18 months
Cause of hearing loss: Connexin 26 gene
Thomas’ story
Thomas was born on the 18 September 2016, he is our only child. We had never considered the possibility that Thomas would have a hearing impairment and it wasn’t until the failure of the newborn hearing screening in the hospital at day three that concerns regarding his hearing emerged.
We were given a follow up appointment at the Freeman Hospital when he was eight days old. We had five days slamming doors and talking to friends whose children had failed the test but had no hearing impairment.
The day of the appointment came and when testing began we were hopeful that it would be liquid in his ears that had led to failure in the newborn screening. However, it became apparent quite quickly when he failed a further two tests conducted by the audiologist that he had a hearing impairment.
We left the appointment, exhausted after three hours of testing and with the news that Thomas had a severe to profound hearing loss.
Thomas’ profound sensorineural hearing loss was confirmed at a month old and after further investigation the causation of his hearing loss was diagnosed; Connexin 26 gene.
Thomas was fitted with hearing aids from four weeks old but access to hearing was not obtainable through these and therefore the decision to pursue cochlear implants was an easy one for us to make as hearing parents.
The wait for the assessment procedure to commence seemed to take ages and we were told to be cautious that when the assessment procedure did begin not to expect Thomas to react too quickly due to his age. We received the appointment for the assessment at James Cook in May 2017.
Thomas coped well with the assessment, responding to the vibrations but not the sounds which confirmed his level of hearing loss. However, as he had liquid in his ear we were told that we would have to repeat the tests at a later date to make them viable. The tests were repeated a week later and he passed, the wait for the appointment date was the next step.
Thomas’ operation date was the 18 July 2016, he was ten months old. He was then given a switch on date for the 10 August. Our key worker managed our expectations well in relation to how he might or might not react.
Thomas did react to switch-on, crying when he heard the sounds. He was very sensitive to the noise so a low programme was given.
Appointments then came approximately every fortnight and we were given programmes to work through.
After a month we had to turn down the programme as he was finding it hard to cope with the noise. However, after a number of appointments he is now fully tuned at 30 decibels across the frequency range.
The main difficulty with Thomas is that in the appointments he likes to babble away so he couldn’t hear the quieter sounds!
Throughout the tuning appointments the contact we had with his key worker at our home helped reassure us and gave us some great tips to help develop his listening skills.
The decision we made to give Thomas implants has had a profound impact on our lives. Thomas is much more inquisitive and gets happiness from sounds. He has his favourite songs and loves pressing the buttons on his toys, laughing at the noises they produce.
We love sharing sounds with him and we continue to be amazed when he responds to his name.
He is now eight months post switch-on and starting to make animal sounds, respond to instructions and watch intently when we speak.
However, that also has to be one of the hardest parts, managing the level of expectation you have for their development, especially in relation to speech.
We have had and continue to have worries over the loss of the processors, Thomas likes to pull them apart in the car and we have had a lost processor which after a frantic half hour pulling the house apart was found in his nappy!
We also have worries over ear infections and impact on the implants but we are learning how to deal with these. However, we know we have made the right decision and we can’t wait to see what else is to come.