Little Heroes - Alex

Ten-month-old Alex from St Albans failed his newborn hearing test and was diagnosed as profoundly deaf when he was just two weeks old. Alex was quickly referred to Great Ormond Street Hospital to discuss the option of Alex having cochlear implant surgery to help him hear. GOSH is a specialist centre for helping deaf children receive these implants – high-tech devices that turn sound into tiny electrical signals, so young brains can learn to listen.

Diagnosis

Mum Caroline describes how she felt when her and husband Thomas got this news:

“At first when we received the diagnosis, it felt like our whole world had fallen apart. For two weeks, we had been in a happy new born bubble and as we have no family history of hearing loss, the diagnosis was a complete shock. We just couldn’t understand how it could be possible.”

Alex was quickly referred to Great Ormond Street Hospital and a couple of months later his parents Caroline and Thomas met with a specialist team to discuss the option of Alex having cochlear implant surgery to help him hear. The implant team is multidisciplinary, comprising of clinicians from many different specialist areas including ENT (ear, nose and throat) surgeons, audiologists and speech and language therapists.

Surgery and ‘switch on’ 

Alex from St Albans playing with GOSH doctor and mum

They embarked on Alex’s cochlear implant journey and Alex went into surgery a few weeks later to have the implants fitted.

Cochlear implants are implanted beneath the scalp on the side of the head, with a cable connecting to the cochlea in the inner ear, the organ that interprets sound and sends signals to the brain.

The surgery took three hours and Alex’s parents stayed at the hospital overnight whilst he recovered and had further tests and X-Rays.

Two weeks later Alex was back at GOSH for his ‘switch on’ where the Audiology team activated the cochlear implant devices to help him hear for the very first time.

Caroline recalls her experience of the day:

“On the day of the switch on, we were both nervous and excited as we knew it was the start of what we hoped would be an incredible journey. The lovely audiologists quickly helped us relax and as always Alex seemed to take everything in his stride. It was brilliant to see him reacting to sound so quickly without any signs of distress – he just wanted to keep on playing with the audiologists!”

Alex’s mum Caroline talks about the support they received at GOSH following Alex’s surgery and ‘switch on’:

“We had an appointment the day after the switch on to check how Alex was getting on and to change any programme levels with the implants. The speech and language team were also there who were able to give some advice on things we should be trying at home.

“A couple of weeks later we had another appointment where they looked at how he was doing and to check the implant programmes were not too loud for him. There was also a speech and language person at this appointment too who interacted with Alex by playing with a number of different toys with him to see if he responded to any of them.

“Great Ormond Street Hospital is an amazing place, full of amazing people.”

Alex, Doctor and Mum at GOSH

A ‘life-changing’ procedure

Alex’s mum Caroline and dad Thomas explain how well Alex is doing post-surgery and how much the cochlear implants have made a difference to all their lives:

“When you put his implants on, it feels like he’s testing them by making noises himself, lots of babbling noises, which is interesting to see and shows they’re working.

“He sometimes seems to have a confused look on his face and then he gets used to it, so to start with he wanted a cuddle when he heard certain sounds, but he was still grinning, he’s never shown a dislike for any sounds.

“We test the implants at home by making general noises like clapping, he always responds to clapping sounds. When you put his implants in there are some pre-programmed levels you can set them to, so we can make sure it’s not too loud for him. You can set it to a certain level and do a few claps and if he looks okay and happy then you know you’re at the right level.

“Since the switch on he’s been really good, we’ve been noticing things with his hearing develop each week – lots of little steps that we hadn’t really thought of in advance. First of all it was the coffee machine which is very loud – he looked very confused when he heard that! Then it was hearing cutlery on plates and now this week he’s started hearing music and the TV, he sort of looks round in the general direction of the sounds he can hear, looking puzzled about what’s going on!

“He also hears voices now and definitely looks up, especially when someone starts laughing, it’s all pretty amazing really, it’s only been a month.

“It’s improved our outlook for him, he’s very likely to be able to learn how to speak now which wouldn’t have been as likely if he hadn’t have had this operation. It’s life changing really and we’re very grateful for it to have happened and really pleased to see he is reacting to sounds.”

The future for Alex

Caroline reflects on Alex’s journey so far and talks of her excitement for the next steps with his hearing:

“Everything has happened a lot quicker than I thought it would. He is already doing things that we thought would take much longer. Being able to point things out to him like aeroplanes, it’s really lovely, we’re really lucky. It’s much better than I thought, I didn’t want to get my hopes up but it’s been amazing already. We’re looking forward to seeing what he does next and when he starts mimicking sounds that will be really good.

“It’s amazing going out as it’s so interesting to watch what he hears and what he responds to. It’s exciting going to new places with him.

“Now he just looks really excited when he hears things, he’s a very happy baby.

“Alex had his first trip to the beach recently and we weren’t quite brave enough to take his processors as we were just worried about getting sand in them or getting them lost. Next time it would be really good to take them so he can hear the sea for the first time.”

Support Great Ormond Street Hospital Children’s Charity

We raise money to enable GOSH to provide world-class care for its young patients and their families in many ways, including funding accommodation where Alex's parents stayed overnight whilst Alex had further tests, X-Rays and his surgery. 

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