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By December 23, 2021No Comments

April 2014

Having a child is always a life-changing event, but when our second son Toby was born, we had no idea just how much our future would be altered forever.

On the 5th April 2014, Toby shot into the world pretty quickly after a totally normal pregnancy. He needed a little help to get his breathing started due to the speed at which he arrived, but after a few minutes we were holding him in our arms and admiring how perfect he was!

When the health visitor came to do Toby’s newborn hearing test on day 10, I knew it was routine and even though in the back of my sleep-deprived mind I had noticed that Toby didn’t startle when I had sneezed or coughed, I knew that all babies were different and that everything would be absolutely fine.

I was wrong.

After numerous failed hearing tests, Toby was diagnosed with a bilateral severe to profound hearing loss.

He was deaf. Permanently. Our world collapsed.

After receiving the confirmed diagnosis, an appointment was made for him to come back to the clinic to be fitted with hearing aids, we were given a leaflet and sent on our way.

Just like that. We were totally and utterly devastated.

Over time, as we tried but struggled to come to terms with Toby’s deafness (even saying the ‘d-word’ out loud was a challenge), we were put forward for the Cochlear Implant assessment programme at St Thomas’ hospital – a wonderful place full of some of most amazing health professionals we have encountered. They helped us to feel that we had finally found a way to be proactive, which was a huge help.

At the same time, we were asked by our local sensory service whether we wanted to find out the cause of his deafness, and although we never expected it to provide any answers, we felt that it might give us some sense of ‘closure’, and so went ahead. Eventually, after several months, we got an appointment to get the ball rolling. My husband was very worried that the deafness was just the tip of the iceberg and a symptom of something more serious but I was optimistic that Toby was ‘just deaf’. Again, sadly, I was mistaken.

It soon became clear that something additional was wrong with Toby as we began to realise that he was clearly not hitting his milestones. Blood test results came back when Toby was almost 8 months old to say that Congenital CMV was the cause of his hearing loss. We had never even heard of it.

The run up to Christmas was exceptionally tough. We received the good news that Toby had been accepted for bilateral cochlear implants, but this was tainted by a visit we had arranged to see a specialist in viruses such as CMV – he explained exactly what it all meant, what Toby’s MRI may or may not show, and the fact that at this stage there wasn’t any treatment that he could benefit from. We had to try to come to terms with the prospect of an even more difficult future than we had imagined.

We got the results of his MRI scan when he was 10 months old, and again the news was far worse than we had feared.

Toby’s brain was not normal. The scan showed extensive scarring, affecting his motor skills and cognitive development, and also showed that he has an increased risk of developing epilepsy. Our son’s brain had been damaged by a very common virus that we didn’t know even existed, let alone knew that I had caught.

Toby is now almost 18mths old. He has cochlear implants and after a number of teething problems in the beginning, is now showing initial signs that he can hear and even recognise some sounds, which is amazing. However, he still cannot sit up on his own, or take weight through his legs for longer than about 5 seconds. He is unable to pick up items and put them in his mouth, meaning he can’t hold his own bottle and is still being spoon fed puree.

Never in a million years did I imagine, in my worst nightmares, that we would be in a situation like this. I find it insane and heart-breaking that I sometimes catch myself wishing that Toby was ‘only deaf’. I cannot believe that the NHS do not educate pregnant women on the devastation that CMV can cause and how it can be prevented, nor that it was not immediately tested for when his hearing loss was discovered.

Our lives are full of numerous appointments and our house is full of specialist equipment to help Toby sit, stand, eat and wash. We have found that thinking about the future is officially a Bad Idea! At the moment it feels like a terrifying place where things might even be worse than they are today – yet we cannot believe that is even possible. We have no idea if he will talk or walk, all we can do is take each day at a time and hope for the best. I hate it.

He is such a gorgeous and smiley little boy, with a proper belly laugh, and the way his older brother dotes on him is adorable, so there are moments when you can forget, just for a second, about all the other stuff. I can now talk about his condition without crying (most of the time!), but continue to find it hard, every day, that we have no idea what the future will bring.

Gayle, Toby’s Mummy