Permanent hearing loss in newborn

[Mashedupbanana]

We found out yesterday that our baby has mild to moderate, permanent hearing loss.

Has anyone else had experience of this? I just don't have any idea of what to expect and feeling a roller coaster of emotions.

[Rebecca2014]

My daughter has moderate hearing loss in one ear. Is it both ears?

[Mashedupbanana]

Thanks for responding. Yes it's both ears, they are both the same.
My partner is profoundly deaf in one ear but you'd never know as he just positions himself to hear in his other ear.

Most of all I want to know how much she will be able to understand a normal conversation.

[Mashedupbanana]

Thanks very much. we have joined up to Ndcs and will hopefully get some more information soon.

[uggerthebugger]

Hi mashed, mine both have permanent hearing loss. My eldest had it from birth, my youngest had progressive hearing loss onset from about 15 months on. They are both profoundly deaf, one in his teens, the other nearly finishing primary school.

Everything Frusso says is bang-on - you asked how much she will be able to understand conversationally. If her hearing loss stays stable, and she gets the right amplification, then almost everything is possible. But for day-to-day stuff, here's how things are working with us right now:

I spent most of today with my DSs. We talked about bloody Minecraft, what will happen to it now Microsoft have taken it over. We talked about what makes toddlers cute, what makes them tricky, and what combination of the two they were like when they were toddlers. We talked about cow farts and deforestation in the Amazon. We talked about the world record for swimming in the Arctic Ocean.

Best of all, we talked about hard, tricky stuff. Their grandma is rapidly dying of cancer, and they want to know how to help her and support the rest of the family. They know it's hard to talk about, so they've written her letters. Long, flowing letters, not with perfect grammar, but with emotions so sharp and fresh it makes me well up just thinking about them now.

I guess what I'm saying is that we have 'normal' conversations - some of the time, better than normal. We've had to work very, very hard to get the basics in place to make this happen. We still have to work at it now, and there are some places where it can't happen easily - like a noisy pub or a busy street, for example. Not every adult or child you meet will get it, and we've also had to fight like hormonal honey badgers to get the kids the basic support they need.

I still remember the gut punch of initial diagnosis; how long it took me to get my head round it, the sheer terror of not being able to work out what their future would look like. But I know now that their future can be as bright as I could have hoped for when we were first trying for kids. They have to work at it, you have to work at it, you can't settle for anything less.

Once you feel up to it, do 2 things:

1. Go on the NDCS newly-identified weekends that Frusso mentioned...
   

1. Visit a proper deaf school (either signing or oral) - Mary Hare School in the south, or St John's School for the Deaf in the north.
   

Seeing deaf children, teens and adults as happy, confident and capable people was the big change for me - it lifted the terror of the initial diagnosis, and made me realise there was a future for them.

Best of luck

[Mashedupbanana]

Thanks. Your boys sound fantastic.
Do you mind me asking, do you communicate through them lip reading or you signing? Sorry if this is a silly question I just have no experience of this at all.

[Wolfbasher]

I have a moderate to severe hearing loss in both ears - had from birth. With hearing aids I have no trouble with conversations and general day to day stuff. I like having subtitles on the TV, as otherwise I miss about 50% of what's said.

I think the advantage of a loss from birth is that you just naturally learn to lip read and pick up external cues.

It's much more important to wear hearing aids than to 'manage' without them - especially for a child. There's a little girl at our church who has the coolest hearing aids - they are transparent and sparkly. I am quite envious :)

[uggerthebugger]

We started out with total communication, same as frusso . People get very het up about speaking vs signing, but imo it's what works that matters - most evidence these days shows that you won't be hurting your deaf child's ability to speak and listen if you sign. It's the quantity and quality of language you can use that makes more of a difference.

Nowadays, we mostly just speak to each other, using sign-supported English for occasional backup, where hearing just isn't possible (like a swimming pool), where we're with a majority of deaf people, or sometimes if we want to be rude about a non-signer...

When they got to about 8 or 9 years old, it got to a point where I found myself dumbing down my language so that I could speak and sign at the same time. The sign we were using was Sign-Supported English (SSE), not proper rich British Sign Language. Even then, my brain couldn't cope with giving them sign, speech and rich language simultaneously. I could give them 2 of those things at the same time, but not 3 - so we went for an oral model.

The boys lip read a fair bit, but lip reading only takes you so far - a lot of consonant lip patterns look pretty similar. You can guess a fair bit with context, but that takes time for kids to pick up.

Two other things to expect: keeping a baby and toddler's hearing aids in is hard bloody work, and don't let anyone tell you different. Second, like Wolf said, girls are pretty keen on pimping up their hearing aids these days - check out this link for some ideas...

[Mashedupbanana]

Thanks everyone. She had the moulds for her hearing aids taken today. It's all sinking in a bit more now.

[uggerthebugger]

That's good to hear. You can't hurry it, the feelings come and go in waves. How's the rest of your family holding up?

[Wolfbasher]

Be prepared for the moulds not to fit well first try - I have always had to go back for them to be adjusted. When they don't fit, they rub the ear and are incredibly painful - can rub into bleeding sores, so keep a good look out for the first hint of redness and go back to have the mould 'shaved'.

Also, aids generally need adjusting a few times - are these digital? They are better.

[Mashedupbanana]

Thanks both, one of the hardest part has been the reaction of others.
We've only told family so far, they are all upset by it, probably because I've been upset when telling them.

I've decided that I'll wait to tell friends once I have got my head around it a bit better so I can put it in a positive light ie she has a mild hearing loss but luckily her hearing aids will help her to hear almost normally. I want to get across that its not a big deal as I think she will be treated more normally that way. Would you agree?

[Wolfbasher]

People are weird about hearing loss, much more so than about sight problems IME (and I have both, so daily experience of this).

My personal advice is not to focus too heavily on "normal". You don't want your DD to focus on "passing as normal" as an aspiration (and therefore feel deep inside that she is flawed). She has this level of hearing from birth - it is her "normal". One in seven people in the UK have some level of hearing loss, from mild to profound. It's actually a pretty normal thing.

When she's older, it's up to her how much she tells people about it, and how visible she is happy for her hearing aids to be. In the meantime, obviously it's up to you - it will be great for your DD if you can take this in your stride and be at ease with it. Ideally, it's not a fact that needs to be hidden, nor is it always a "big" piece of information that others need to be told.

A hearing loss principally means that many situations or activities are more difficult than for someone with a more typical level of hearing. There are quite a few things that can mitigate this - some will be within your DD's control (like wearing hearing aids, lipreading, positioning yourself in the room etc.) - some not within her control (like the level of background noise, the availability of visual information as well as audio, the considerateness of other people).

I think it's best to focus on the practicalities of situations rather than to agonise over the "concept" of being hard of hearing / deaf IYSWIM. I know that's an emotional journey for you, but I think it's an important one.

[BuckskinnedAstronaut]

Mild to moderate loss, she'll probably do really well with hearing aids and not have any significant language or speech delay. They aren't the same as conventional hearing (they'll be geared up for picking up speech at close range when there isn't much background noise) but with some help and adjusting how you do things they will make a huge difference. And the sooner she starts wearing them the better she'll be at keeping them in, which will improve her access to sound and help her language development. Children's HAs are available in a wide range of colours so speak up and ask if you don't want conventional NHS beige. DD2 has red aids with fuchsia and yellow swirly moulds at the moment. You're going to be getting new moulds a LOT in these early years as her ears will be growing rapidly. Ask about Tubelock (which makes it more difficult to get the moulds off the tubing when she starts pulling the HAs out) and locking battery drawers (which make it more difficult for her to swallow the batteries when she starts pulling the HAs out) if you aren't offered them automatically.

Have you seen a ToD yet? If you get a good one they will make life a whole lot easier. They will also be able to let you know about events for deaf children and babies and their parents in your area. We are lucky to live somewhere with a really good Hearing Support Service and would often be at a couple of groups each week, and DD and I have got to know lots of other children who are deaf or hard of hearing. If there isn't much organised officially in your area there may be an NDCS Local Group who arrange activities and social get-togethers (or you may hit the jackpot and have both).

As she gets older NDCS have a wide range of activities, weekends away, etc. -- it can be very useful to have (D)deaf and hard of hearing peers to normalise her experiences.