Living with EVA

Written by Sarah and Laura of Arthurwears

You can follow Arthurwears on the following links TwitterInstagram and Facebook


Sudden hearing loss in a child can come as a huge shock. Not only does it change their perception of the world around them and put them in a potentially frightening and unfamiliar situation – it also changes the lives of those around them, who interact with them, who are used to dealing with and speaking to them in a certain way or a certain tone. It is a steep learning curve, not just for the one who has lost their sense of hearing, but those who now have to learn different ways of communicating.
Last year my younger sister, Laura, called me to tell me that my young Nephew Oliver had suffered sudden hearing loss due to what we later discovered was EVA – Enlarged Vestibular Aqueducts.

 

I am going to hand over to Laura now to tell you their story….

 

The day after my son Oliver’s fourth birthday he fell off the sofa and bumped his head on the floor. A common occurrence for Oliver. He was premature, and therefore delayed in his gross motor skills. It has meant he’s taken a lot of tumbles in his four short years so far, but my heart will still often stop for that brief moment. Usually, he gets up, brushes himself down, occasionally cries, but always carries on as normal. This time was different. This time Oliver got up, brushed himself down, had a little cry, and stopped responding to those in the room. He’d gone deaf.

 

The days after went by in a blur of hospital waiting rooms. The doctors in A and E couldn’t understand how it had happened. Oliver would need a brain scan and audiology tests. The words “brain tumour” were floated around by specialists and my worst nightmares seemed like they were being acted out before my eyes. It was a frustrating time for both myself and Oliver. I’d realised that if I got really close and shouted in his ear he could just about understand me. This was great. It meant he wasn’t profoundly deaf. For Oliver the world became a frightening place very quickly. Familiar practises were suddenly completely different; what was once a familiar and easy bedtime routine of prayers, story and bed, was now just hours of crying, and not just from Oliver. The hospital were slow to arrange tests, and they couldn’t give any answers as to why Oliver had lost most of his hearing. In the meantime, I had to try and keep life as normal as possible for Oliver, but this was so difficult. Not being able to read your son his bedtime story for the first time in his life, because he can’t hear you anymore is difficult to come to terms with… but I put on a brave face, so as not to upset him. It opens up a world of worries that you as a parent had never had to think about before, and as a parent, you’ve already got enough worries going on in your mind as it is!

 

I started to panic about everything:

 

How would he hear his morning alarm to wake up?

How would he hear an alarm in an emergency?

How would I teach him to read?

How do I talk to him when I’m driving?

How do we learn sign language?

Does he need to go to a specialist school?

 

Oliver and I were suddenly thrown into a parallel universe, and had no idea what we were doing.

 

It took almost a week for Oliver to be diagnosed, and that was after being admitted onto the Children’s ward and given a sedated MRI scan. We were taken to a quiet little treatment room and two specialist ENT doctors came to talk to us. They told us Oliver had bi-lateral EVA: Enlarged Vestibular Aqueducts in both ears. In layman’s terms, the pockets in his ears that hold fluid are abnormally large. It meant that when he fell and hit his head the impact sent a shock-wave through the fluid and damaged his hearing permanently. My son was going to be deaf forever. It sounded awful, but at the time I was just so happy he didn’t have a brain tumour. I’m a very practical person.

 

To be given this diagnosis meant I had a starting point. I needed to understand it and then I could learn ways to deal with it and give Oliver the best chances in life. I asked the doctors about the limitations Oliver would face. Due to the potential permanent damage an impact to his head can do, Oliver must refrain from any contact sports (bye bye, boxing); he cannot be exposed to rapid changes in pressure (bye bye, bungee jumping); and he cannot do activities where he jumps around (bye bye, bouncy castle).

Immediately, I realised how difficult it was going to be to try and stop a four year old jumping around. In terms of other information on the condition, the doctors had very little to offer. EVA is rare, so rare that the hospital had no literature on the topic. The ENT doctors admitted that they had actually researched it on the internet before coming to tell us the diagnosis. This did not fill me with confidence.  

 

Upon leaving, I was provided with the National Deaf Children’s Society website and told to research it myself, before returning in a few weeks to see another ENT paediatric consultant.

 

I have to say, I left rather disheartened. I was pleased we had a diagnosis, but I knew next to nothing about the condition. Only after doing my own research could I fully comprehend everything. One thing became crystal clear: the chances are, this was always going to happen. He has the condition, so it was just a matter of time until he lost his hearing. In addition to that, Oliver’s hearing could fluctuate, even if I wrapped him in cotton wool. It was highly likely that he’d lose all his hearing at some point. It meant that Oliver would need regular hearing tests with audiology, and would wear hearing aids daily. These appointments came to take over our lives in the following weeks. It was a very distressing time for both of us.

 

Before Oliver got his hearing aids we struggled to communicate. It was very stressful and noisy, with a lot of shouting, attempts at sign language, and a lot of frustration. As soon as Oliver got fitted for his hearing aids he was like his old self again. He could hear his mummy again; he knew where people were without having to physically see them; he could hear music and sing along; he was so much happier. The daytime routine settled back to almost the same as before. Night time however brought it’s own unexpected battles. Oliver took hours to settle, because the combination of darkness and silence was too much. Unexpectedly, the introduction of his hearing aids only made things worse. Going from being able to hear all day with them in, to complete silence at night, when they’re taken out, is very unsettling to such a young child. We had to quickly adapt our routine to ensure Oliver was feeling safe and secure enough to settle to sleep. Six months later I’m still ironing out the creases, but life is settling back into normality.

 

I’m not going to say it has been an easy six months. As a parent I’ve found it very difficult to find support. Often I’ve felt like I was working alone trying to arrange things for Oliver’s new routines, especially when it’s come to his education. I wasn’t given any information from the hospital about who should be contacted to let them know about Oliver’s new disability; I wasn’t told who I could talk to, to try and get support and advice, as a parent of a deaf child. The NDCS have a great website with lots of information on, and run many information programmes for parents and families of deaf children to attend for free. In July I’m due to attend a weekend programme for parents of newly diagnosed deaf children in Oliver’s age range, and I cannot wait. I feel like I’ll finally get answers to all the questions I still have, plus I’ll get to meet parents in similar situations. I have to say the hardest part about any of this is the social side.

 

Something I didn’t account for is how many parents, no matter how hard I seem to try, don’t want to organise play-dates with their children and Oliver, as he’s limited on the activities he can do. Soft-play just isn’t possible for Oliver any more, and unfortunately, that’s the popular choice for parents. It’s a little disheartening for me, as Oliver is such a lovely, sociable little boy. In all honesty, if you didn’t realise he was wearing hearing aids, you probably wouldn’t realise he was deaf. It’s the beginning of our EVA journey, and we still have a fair way to go, but so far, I think we’re coping well. Oliver especially, he’s so proud of his hearing aids and loves showing them to people, and I’m so proud of him.

 

Laura x

Advertisements

2 thoughts on “Living with EVA

  1. Hello Laura. What an emotional story! I had to stop part of the way through to catch my breath. I too have experienced sudden hearing loss (The doctors think I have cochlear hydrops – but are not sure what caused this). I experienced it in one ear, last August, and as an adult am still struggling to carry on with my normal life. You and Oliver sound absolutely amazing! I can only start to imagine firstly how difficult it is for him to, all of a sudden, have the way he interacts with the world change so drastically. It is difficult for children so young to express themselves anyway, but this must have made it so much more. Secondly, I cannot start to comprehend how it must have been for you. I have the advantage of being able to explain my hearing issues to the people who are closest to me, but for you, I assume you must be guessing everything – seeing what things work and what things don’t…I really share your frustration about the lack of knowledge and research on inner ear problems. I still haven’t been told any ‘definites’ regrading my hearing loss. The specialists told me that there isn’t enough research being done on this!

    … In case I can help by explaining a few things that i struggle with – maybe your son also is having difficulties with these things (?):
    – sensitivity to sound (certain sound like running water in a metal sink, police car sirens and anything loud)
    – Eating crunchy food initially sounded really noisy and uncomfortable
    – Lots of people around (maybe something to do with the balance function of the ear)
    – difficulty ‘hearing’ when there is any background noise
    – Sound localization
    – tinnitus – this can be really difficult to cope with when trying to go to sleep – when your sons hearing aids are switched off at night, if he is suffering from tinnitus then the tinnitus noises will come to the forefront of his attention – this might be something to look in to (sorry, if I’ve just told you things you already know)

    Something I do know, is that things will get easier. I know it’s easier to say this than to actually believe in this…but it’s true. With time Oliver will start to see his situation as ‘normal’ for him. He is very young, and children have an amazing capacity to adapt. I recently found out one of my friends who i used to work with, was also deaf in one ear. She had lost her hearing at the age of 2, and had adapted her life around it….I didn’t even know she was hearing impaired!

    Anyway, thank you for sharing your story. You sound like such a strong woman and Oliver obviously has a fantastic mummy! I’m really hoping the other mums start to be more accepting, and you can arrange some play dates – maybe theme them? – ‘play dough play’ might be a good one? (I’m an early years teacher :P)

    Take care, and wishing you the best of luck with the future.
    – Carly

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s