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Unilateral deafness

Posted by bear20
06/05/21 06:18 PM

Hi. We have recently found out our 8 month old has unilateral deafness due to the nerve not developing in his ear. We have been given a couple of different option for when he he gets older. One being the hearing aids (transmitter and receiver) and the BAHA implant. 

we are really not sure what route to go down or even to go down a route. 

he's doing really well milestone wise and development, he Just still struggles with localisation.

has anyone got any experiences on this and what route did you take. and how do you find things now they are older. 

Thanks for reading, looking forward to your reply. 

Posted by gmac
12/05/21 12:22 PM


I'm afraid I don't have any advise but I wanted to reach out because we're in exactly the same position!

Our son is 1 this week and has unilateral deafness in 1 ear due to the nerve not developing aswell. We have an appointment in June where we need to start making these decisions too. So no advise but total sympathy with how hard the decision is. We're totally undecided and we're also finding it hard to find real life experiences to help our decision. 

Good luck with your decision :)

Posted by m3run
12/05/21 01:41 PM

Hi bear20 and gmac, I'm afraid I also don't have advice, but I can share our experience to date My eldest daughter has severe to profound unilateral hearing loss from birth, it is also sensorineural so it sounds similar to your children. We were overseas when she was born and we tried a conventional hearing aid from around 4 to 9 months, when she kept on putting it in her mouth and we saw no benefit so we discontinued this. We also tried a bone conduction hearing aid (BCHD) for only one week but she cried every time we put it on so we quickly gave up!

We have since chosen no intervention (we were never offered a BAHA - this wasn't available to us 4-5 years ago). My daughter started reception this year and is thriving. She cannot locate sounds and I don't expect this to change, but she does play sports and it has not yet hindered her. She finds the lunch hall a little overwhelming and her deaf teacher who visits her in school has assured us this is pretty common due to the level of noise and poor acoustics in large halls.

The advice we are given is that it is really up to us as to whether we think any intervention would help. Our audiologist doesn't have any particular recommendations. It is a lot of pressure to put on parents without any experience of hearing loss, but it appears there is not enough evidence in children with unilateral hearing loss as to whether intervention is helpful and they seem to treat it on a case by case basis. We will of course continue reviewing annually or more frequently if we should consider intervention, but at this stage we don't feel there is anything we should do to improve her quality of life.

Wishing you the best of luck with the decisions that lie ahead.

Posted by mike86
12/05/21 05:20 PM

Hi, when our little boy was born he failed his newborn hearing screening test and was diagnosed with severe to profound unilateral hearing loss, he was fitted with his first hearing aids when he was 6 weeks old, when he was 1 he was then fitted with a cochlear implant in one ear, the advice i would give is any options you can take for hearing aids or BAHA or cochlear implant i would take the difference it has made is absolutely amazing, the earlier your little one is exposed to sounds and language really does make all the difference, we know our son is a little behind in terms of language development but the progress he has made in the last year or so is unbelievable he really is coming on in leaps and bounds, 

Posted by lisag
13/05/21 10:08 PM

Hi, my daughter was diagnosed at birth with severe unilateral hearing loss. We weren't given any option as  they mentioned her right hear had access to sounds for both ears. They also informed that kids with unilateral hearing loss without hearing aids etc grow up without any problems. My daughter is now 7 years old and she still haven't had any intervention. She has frequent test to ensure her right ear is still working enough for both ears. However, they did say if she had hearing aids there is a chance it'd make hearing difficult as she'll hear more outside noise. It's always been a grey area but she's doing amazingly well. She does struggle at times to localise sounds especially in a loud environment. It doesn't hold her back at all, she loves swimming and playing piano. Keep an eye on speech and make appointment with speech and language therapy early if needed.

All the best x

Posted by teacoffee
17/05/21 09:05 PM

I'm not sure what BAHA is so can't comment on that. But I have spent my whole life completely deaf in my right ear. Been in my 30s, when I was a child there was nothing available to me and I didn't even know I couldn't locate where sound was coming from until I figured it out on my own in my late teens! 

So without any help from aids, I have had a full life, I did ok at school, I can play two instruments, I've made good friends and I'm now a primary school teacher where my job is all  communicating. I'm telling you this just so you know that unilateral hearing loss is a bit of a pain but I've never known any difference and I've done fine. Your babies will do too. 

But here's a few things about been unilaterally deaf that is a bit tiring;

1) When you ask where someone is and they shout "here"- means nothing to me you might as well say "anywhere". Be specific- "I'm in the kitchen"

2) When sitting around a table, it can get tiring talking to people on "the wrong side".  Where possible, sit at a rectangular table where your child can sit at the end (so no one is on the deaf side) and avoid round tables- especially in noisy restaurants. 

3) It can cause you problems socially that you're not aware of. It's perfectly possible (and likely frequent)  that your child can hold a conversation without anyone having any idea that they are deaf. But there will be occasions that your child will be approached on their deaf side, will be spoken to and they will have no idea. If the person talking to your child doesn't know they are deaf, it can appear that they are being rude. Worse is, your child will have no idea they're appearing rude because they don't know theyve  "ignored" someone. It took me to my late 20s to realise that I have to tell people I'm deaf as soon as I meet them to overcome this problem (sometimes I have to remind people Im deaf because they forget!). I wish I'd known it as a child as I think, looking back, it caused people to get cross at me for reasons I couldn't understand at the time- I didn't know I hadn't heard them. Get your child into the habit of telling people they are deaf at the outset.

So, this is a long way round getting to an answer to your question; last month I was given hearing aids and I love them! (Although due to covid ive naturally not used then yet in really loud settings!)  For the first time in my life I can sit wherever I like around the table. I know when someone is talking to me on my deaf side, it's not as tiring trying to listen carefully all of the time. It might be your child doesn't want to/ need to wear them all of the time but I'd certainly recommend you give them ago. 

Posted by samb0
19/05/21 07:59 PM

My daughter was diagnosed with bilateral hearing loss at the age of 4. We were given 2 options either bone anchored hearing aid or a magnetic one. she trialed the baha on a headband for a few months and she came on leaps and bounds. We opted for the bone anchored hearing aid and it has been amazing for her she wears it all day from as soon as she gets up until she goes to bed. We've also asked now to have her second one fitted. The operation is scary but it is definitely worth it. 

Posted by loujsav
23/05/21 08:43 AM

Hi there. I am mum to a 15yo with unilateral deafness caused by meningitis when he was 2. He has worn a bone anchored hearing aid since he was 8 years old. He wears the Ponto which is made by Oticon Medical, the preferred make by Birmingham (cochlear are the other company that make them). My only regret was not getting it when he was younger.  It is amazing how much the deafness hindered his ability to learn to read and write; it also impacted on behaviour.  He went from below average to above average in 3 months of having his BAHA and is now on course to get really good GCSE results.

We were fobbed off quite a bit when he was diagnosed but were eventually given cros aids which he hated. After a lot of pushing (wouldn't be an issue now as guidelines have changed) we were referred to Birmingham Children's hospital. They are a centre of excellence for BAHAs. He tried one on the headband which gave enough benefit for us to decide to go ahead with the operation. We have had very few issues and he manages keeping it clean himself. I think babies can be given a baha on a bbut cannot have the op until they reach 5 years old. There is a brilliant Facebook page for people looking into BAHAs "Baha and Ponto Users UK" and I know there will be others on there who will have started the journey sooner than we did!

Good luck

Posted by happyc
21/07/21 08:43 PM

I know it seems like not a big deal cos it's only one sided and even the audiolgoist fob you off. but really eeryone needs two ears. I just met a mum of a nine year old and she said they've had a bone conduction aid for two years and never looked back. They kept saying one ear was enough and he'll still not locate sound etc. so they took their time and didn't push for anything cos he was managing. But then his behaviour detoriated and lo and behold after getting aided his behavoiur improved AND his scholistic abilities. The only regret she has is not aiding him sooner so i think it's worth pushing for. If you're still undecided call the NDCS helpline and ask for an appointment wiht thier audiolgist. After chatting on the phone you will have more knowledge which is more power...

Posted by mumtodeafunistudent
04/08/21 02:47 PM

Hi all

I have a, soon to be, 20 year old son. He lost the hearing in his right ear when he was around 3 years old, due to a severe ear infection. He used CROS aids for many years with good effect. As he grew though, he was not keen to wear them and felt he could manage without. We were never offered BAHA and as an adult he is glad we didn't have the option as he would not have been able to train as a police officer. He is currently at university doing a degree in policing. He does struggle socially as he can come across as rude when he doesn't hear people. Over the years he has got better at telling people he is deaf - now as an adult, he really sees the benefit of telling them as they are more understanding. NDCS have been amazing during our journey - always available for advice and a sympathic ear.

There is no right or wrong answer when it comes to hearing equipment - it's what is right at that time for you all. Having said that, I work as a teacher in a school for deaf children and implants and BAHAs give deaf children an amazing opportunity to access sound.

Posted by tzbatman
04/11/21 06:20 PM

Hi. I know this is probably pointless replying to as you may have already chosen the path you want to go with BUT I can share my experience. My 4 yr old son has unilateral profound hearing loss which was diagnosed at birth. When he was 1 1/2 he was fitted with a BAHA due to his hearing ear being full of glu! The BAHA made such a difference it was fantastic! He got on absolutely fine with it.