We were still getting used to the fact we had a mini human who was awake most of the night when we found out that Harry was deaf. He was just 7 weeks old when he failed the Newborn Hearing Screening.
After a series of tests and a very intensive ABR he was confirmed as profoundly deaf with no threshold of hearing. The emotions hit us like a steam train and immediately we felt worried and scared for what the future would hold for our perfect baby boy. I remember that day so clearly; when my partner Scott and I held each other close and cried ourselves to sleep. We almost had to mourn what our idea of a perfect child was, and come around to the fact that our experience as first time parents was going to be a little different than what we had expected.
We spent a good few days feeling extremely upset and worried for our little chap. Our baby was the only deaf person we had ever met. It was a completely new thing to learn about. I started to panic when I left him alone to sleep, as I thought he would wake up and be scared because he couldn’t hear us. It took me a while to realize that actually Harry had never known any different, and he shouldn’t be scared because to him the world had always been silent.
It was as quick as the day after Harry’s diagnosis when we had a phone call from our local Teacher of the Deaf. The amount of information being fed to us was quite overwhelming, but comforting knowing a support system was already in place. She came over soon after to introduce herself, and we immediately felt confident that our son wasn’t going to be forgotten about or left behind. She explained that she would help us with his development from Day 1 until he finished his education, which filled us with hope and a lot more confidence than we had initially had.
Before we knew it, Harry was 7 weeks old, received his first set of hearing aids and we were learning the basics of British Sign Language! The whole experience was worlds apart from what I had imagined my life as a new mum. I thought I would be spending the newborn days in coffee shops, catching up with friends, with my only worries being if I smelled a bit like puke or when I would ever sleep again. Instead, I was plagued by the fear that my son would never get to hear his mummy’s voice.
It became apparent pretty quickly that Harry wasn’t getting any benefit from hearing aids, as his hearing loss was too profound. When he was around 6 months old he had a hearing test with them in and he failed it miserably! It was then that we were offered the option of putting him forward for cochlear implant assessment. It wasn’t even a decision for us, we immediately accepted the lengthy process of finding out if he was a suitable candidate.
The process was very long and frustrating at times, mainly because of waiting times for important parts of the assessment, like the MRI scan. The scan would tell us if Harry’s ears and cochleas were formed enough for him to be given the operation, so waiting for that was absolute agony. We also had a series of appointments with the Auditory Implant Centre in Southampton, which include a lot more hearing tests for Harry, physiological tests, device picking and a round table meeting with current users.
Finally, a week before his first birthday Harry had his MRI scan and it was quickly confirmed that everything looked great and he was the perfect candidate for the implants. As you can imagine we were completely and utterly ecstatic! The thought of giving our special boy hearing filled us with absolute joy!
At 14 months old, Harry went down for the 6-8 hour-long surgery to have his Advanced Bionics cochlear implants internal parts fitted. Of course this day is one I would rather not remember, but by the morning after the operation he was smiling and wandering around like nothing had happened! It was then that I knew that we had truly made the best decision for him.
A month later, after his scars had healed, he had his initial “switch on” – the most important day in our lives!! His first reactions were very subtle and different to what we had expected but he didn’t cry and he just sat there taking it all in. During the next few weeks we visited the AIC in Southampton regularly, to slowly increase the volume. Then, we started to see some real reactions from Harry.
I will never forget the first time he turned to look at us when we called his name, it still brings a tear to my eye! From that day on he has come on leaps and bounds, he started to say “Mama” pretty quickly and now he can say a handful of words, including “no,” “more” and “Daddy.” He still uses British Sign Language, which we try to encourage as much as possible, as we quite like the total communication approach. He is acing all of his hearing tests and can hear very quiet noises around the house including whispers and whistling!
Even though he can’t tell me just yet, I know that Harry loves to hear with his magic ears. He’s the first one to dance when music is playing and he loves to “sing” along to his favourite TV shows. He is still and always will be a deaf person, as cochlear implants aren’t a cure for hearing loss, but I’m so unbelievably grateful for the technology that has been created allowing my son to experience the beauty of sound.
Lucie is a lifestyle and parenting blogger from Hampshire, UK. She is mummy to 2-year-old Harry who is profoundly deaf and a bilateral Advanced Bionics cochlear implant user. She loves drinking tea, cozy nights in with her family and pinning on Pinterest!
You can follow her here on Open Ears on a regular basis, or on her personal blog, Lucie and the Bump.