How We Got Here

Alfie is deaf. You probably already know that. I’ll do another post explaining WHY he’s deaf another time, but for now, I wanted to tell you the process of finding out a child has a hearing loss and what to expect. Our NHS service is wonderful and although I know not everyone is lucky enough to have as good of an experience as we did, I’d like to start by just taking a minute to thank everyone we’ve met so far in this journey, for working so quickly and for supporting us.

Every child has a newborn hearing screening test, usually by a health visitor. We knew there was a chance that Alfie could be deaf, but we wouldn’t know for sure until this happened, so when it did, as you could imagine, I was pretty anxious to see the results. Alfie was around 3 weeks old when this happened, they popped some little headphones in his ears and the health visitor stared intently at the hand-held machine the wires connected into. It seemed to last for hours, but I know it was only a few minutes. She kept saying “no clear response…” and I kept sitting, waiting for her to explain what that meant. When she’d finished, she explained that for a clear hearing test, they expect to see 8 positive brain responses from 8 different frequencies, and Alfie had at best given 3. She offered to come back a couple of days later and repeat the test, which she did, and found the same results.

The next step was for a lady with some more specialist equipment to come and see us, from Great Western Hospital in Swindon. It was pretty similar, except instead of little ear buds, they had cups to cover the whole ear. But again, he failed this test too.

We were then invited to see an Audiology specialist, but we needed to travel to Swindon for this, mainly so they could conduct the tests in a sound-proof room to get the most accurate results. Alfie needed to be asleep for this as instead of simple earphones, they connected pads to his head, neck and behind the ears to read the brain activity during the test, which was tricky on a baby so small! This one was a bit longer, as they played different frequencies at different volumes to try and establish where his hearing cut off. I could hear the screeches being played into his ears, and judging by how little he responded, I already knew what the answer was going to be.

The next week we went back to Swindon to complete the rest of the tests and get our diagnosis.

“Alfie’s hearing loss is mild, around 40-60 dB, and he would definitely benefit from hearing aids.”

After a very prompt referral to Salisbury hospital, Alfie had the impressions taken for his hearing aids, and we had an appointment made the following week to have them fitted. He’d be 7 weeks old.

Needless to say, it was a big day for us. Although we knew Alfie had access to SOME sound, this would allow him to hear more than he’d ever been able to before, maybe hear us whisper to him, or hear us sing to him properly without being so close to his ears.

 

The first little ear pieces were so tiny. I get emotional now still looking at them. We were talked through the maintenance of them as they fine tuned them to Alfie’s needs, and before we knew it, we were walking out of the hospital with our little man, fast asleep, with two huge hearing aids hanging off his ears.

They were a nightmare to keep on! Every time he moved, one would fall out. They’d scream with feedback and Alfie would get irritated with me trying to hook them over his ears every 3 minutes. And then we found the answer.

Hearing aid headbands were our life saver. I found Charlotte through Instagram, and immediately ordered one to try. It arrived within a week, and for the first time, Alfie was able to wear both hearing aids at once for a good few hours. We were absolutely overwhelmed with relief. I soon ordered a few more designs to match different outfits and soon enough, the hearing aids were staying in all day. every day. He’d had his snazzy new green aids delivered too, so this kid looked SUPER cool.

In between all this, we were having to travel to Salisbury every week or so to get new impressions made as his little ears were growing so fast, which was a pain, but totally worth it. We now go once every 6-8 weeks as although he’s still growing, it’s slowed down a little!

In October, we met with a consultant to see if he was a suitable candidate for cochlear implant surgery, and we decided then that we’d see how he gets on over the next year before making any decisions. Alfie seemed to be getting on really well with his hearing aids, developing all the right sounds indicating normal speech development and was, in general, an incredibly happy, chirpy boy.

In January this year, he had his first test since that first once to check his hearing hadn’t deteriorated. We were very surprised to learn it had. His initial 40-60 dB loss had plummeted down to 90-110 dB. We didn’t know why, we were hoping he was all congested after his period with croup, however a repeated test in April showed similar results. His hearing aids were now pretty much at full power, and he still wasn’t getting all the access he needs to be able to hear and develop speech

The test is done by keeping Alfie distracted and playing different frequencies at different volumes in each ear in turn. When he hears a noise, he looks up and is rewarded by seeing the cool flashy light! This teaches him that he is rewarded if he shows us he can hear the sounds, or in other words, positive reinforcement.

The last test was this month, and fortunately, Alfie has recovered 10-15 dB of his hearing. Prolonged congestion from the croup and some colds, combined with teething, certainly hadn’t worked in his favour, but now we could see a light at the end of the tunnel. It wasn’t by any means ‘better’, but it hadn’t got any worse.

We’ve ordered him some new hearing aids, which will allow us to make more adjustments to his needs, including increasing amplification in the future if he needs it. When they’re fitted in a few weeks time, he’ll have another test to make sure he gets on with them. They think that with the exact fine-tuning they can do, after a period of adjustment, Alfie will likely excel with speech development and continue to amaze us with his resilience.

At 14 months old, Alfie has known no different. Life to him, is hearing things through these clever little computers behind his ears. He (most of the time) leaves them alone and he knows what they’re for, will ask us to put them in for him, or take them out when he’s tired or ready for a nap.

These little pieces of technology have been around for only a few years, and thanks to them, our precious little boy can enjoy the world with us, enjoy music with us, play games with us and communicate with us. His hearing aids are part of him, and to be quite honest, he looks weird without them now!

Ax

 

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