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Newborn diagnosed with hearing loss

(28 Posts)
stringbean Sat 20-Nov-04 13:07:03

Our dd is seven weeks old and has just been diagnosed with a moderate sensori neural hearing loss; we've had moulds taken for hearing aids this week, and she'll need the aids for life. Its unlikely she'll have to learn sign language (though its been suggested we do baby signing with her), but time will tell. Obviously this is not what we wanted for her, but we're being positive about it and not moping - although its a bit of a shock, its not the end of the world. I broke out in a huge allergic reaction to something (possibly hormones?) at 8 weeks pregnant, and wondered throughout the pregnancy if it would have affected the baby, so for this reason, its perhaps not entirely unexpected.

Just wondering if there are any other parents out there who've been in a similar situation? We've been referred to an education specialist who can provide us with help, but just wondering about practical issues to start with. How do you keep hearing aids on a tiny baby? How do you explain it to a sibling (we also have a 3 year old ds) and involve them too? Are there any organisations you've found to be of particular help? Were you advised to apply for DLA, and did you get it? I'm due to go back to work in March/April and have dd's name down for the same nursery as ds, where she'll go 2 days a week. Is this a suitable environment for her? Already feeling guilty at the thought of leaving her when I return to work, but don't want to treat her any differently to ds - is this realistic? As you can see, lots of garbled thoughts, so any advice offered would be much appreciated.

Many thanks.

misdee Sat 20-Nov-04 13:29:13

think the nursery idea is a good one. thats about all i can comment on i'm afraid. have a cousin who is dfeaf and had hearing aids from a young age, but dont see much of her. she is brilliant at lip-reading tho.

jabberwocky Sat 20-Nov-04 13:36:01

I know a couple of years ago in the US the woman who won the Miss America contest was deaf. She discusses various issues on her website link and her mother has written a book about her childhood "Yes, You Can, Heather!"

merlot Sat 20-Nov-04 13:45:11

<<<<hugs>>>>> to you Stringbean. Positive is the only way .

Dingle Sat 20-Nov-04 13:55:49

Stringbean, I know it must be a frightening time for you but try not to think of too far ahead. Please try not to put a "cause" to dd's condition, don't blame anything or anyone-it won't help you in the long run.
I don't mean to sound patronising, that is the last of my wishes. I really understand how you are feeling.
My dd is now 3, has Down Syndrome and was diagnosed with a moderate hearing loss at about 7 weeks too. (DS prone to glue ear, this has passed but can recur any time)I had "accepted" the fact that she has DS, but this was the first "stab in the back" IYSWIM. It was the first of many hurdles we had to jump.
At the time dd was born ds was just over 2, it was difficult to try to explain about her condition to him, but I still felt I needed to try. I have always said to him that dd has Down Syndrome which means she may need extra help to do things other children do easily. I can remember telling him that dd's ears weren't working properly. He loved to help out and took great pride in helping her to learn the signs-don't underestimate yourself or your ds.
It may not be approprite but take a look at the "makaton" thread. There are new programs coming up on TV that you could tape. I am sure that your ds will love them and they may give you a taster for what may be ahead.
I'm sorry to go on, but what seems like a huge step to overcome now, will in time just become natural for you and your family.
Hugs to you all.

mieow Sat 20-Nov-04 15:43:42

re the DLA you can't claim till bubs is 3 months old. I can't comment on deafness, but I have an idea as DD1 was dignosed with high frequency hearing loss at 25 months, as it is she is fine, and doesn't have hearing loss after all, but it was a terrible time.

Davros Sat 20-Nov-04 16:55:36

I've got a good friend whose DD is deaf (as she describes it). She has 2 hearing aids and speaks well but her articultion is a little tricky. Her mum says she wouldn't speak at all if she hadn't had the hearing aids. I'm seeing her on Monday so I'll ask her more, I know she's very involved in one of the charities and gave a talk at a conference last week. She also told me that there are 2 branches of education-style for children with hearing probs, either with hearing aids or cochlear implants and using speech or no aids and using signing and the 2 branches are quite distinct depending on the child's condition although I suspect that signing with a very young 'un would make sense either way. Sorry if I haven't explained this well, I'll speak to her on Monday.

stringbean Sun 21-Nov-04 14:23:49

Many thanks for your replies. Dingle, I don't think you're being patronising at all. I guess I'm wondering about possible genetic causes too, but you're right in that focussing on finding a cause won't help us in the long run. I do realise that in order for dd and her brother to accept this, then we have to be accepting of it too, and just get on with it; this is how our family will be, and we'll just take it one step at a time.

We've told ds that his sister's ears aren't working properly; not sure how he'll take to her having hearing aids - might start complaining that he wants them too, knowing him! Davros, I'm starting to realise about the education differences, and suspect that aids and speech will be the way to go, given what we've been told so far - we'll just have to see how dd gets on with hearing aids.

It's very odd, I thought that something like this would come as a real blow, but I'm surprisingly calm about the whole thing. Reactions from family have been really positive (we're lucky they all live close by), and I'm sure there wil be times in the future when we will need their support; had to explain to dh's mum this morning about it - she had assumed it was glue ear and would improve - but she was accepting of it, though sad for dd. Telling friends with children has been harder - they're more visibly shocked by it all - but we're determined to be positive. So much so that yesterday we decided 'oh sod the expense' and have booked flights to go on a skiing holiday in March with my family. Ds loved it when we went this year and will start lesons in kindergarten for the first time; hopefully dd will follow him in a few years' time.

Dingle Sun 21-Nov-04 19:53:26

Stringbean, so good to hear that you have the support of your family around you!
I mentioned the point about not focusing on "a cause" because I have been there myself, why did dd have Down Syndrome? It bearly crossed our minds, it didn't matter, she did, we loved her, we would do our very best for her!
I'm not sure at what level of hearing loss they would bring in BSL rather than something like Makaton or Signalong. Do they go straight into BSL anyway or would they start teaching a more basic sign to start with?
As for the DLA, surely you should go for it, get the forms ready at post just prior to your dd being 3 months.
My dd had hearing problems when I completed hers so if you need any help I would be more than happy to dig them out of the filing cabinet!At least you couls see the sort of things to put down.
As for the hearing aid, although we have, so far,manage without them. If they can fit them to tiny babies who have DS, with their tiny little ears/ear canals-then that is surely not worth worrying about. Children with DS are very visual learners anyway any there are so many ways in which you can help your dd along.
Enjoy her.

mizmiz Sun 21-Nov-04 20:00:51

You must be feeling very shocked.
There is not a lot I can say but as a speech and language therapist I want to add that the earlier a hearing loss is diagnosed the better, and that the prognosis is extremely good judging by what you have said about the nature of the hearing loss.

It is a lot to deal with so soon, but believe me the emotional and practical impacts will be so much less on you all now than they would have been a couple of years down the line.

Until fairly recently a child like yours could have really suffered for a couple of years before being diagnosed.

All will be well.
Enjoy the snow!

judetheobscure Sun 21-Nov-04 20:30:23

I have a moderate sensori-neural hearing loss which I have had since birth. In my case it is genetic in origin. I was diagnosed when I started school (about 5) and had hearing aids from then until leaving school at 18. I don't wear hearing aids now as I found them rather bothersome in several ways. However, that's not to say I don't think they did any good - especially when at school.

I do think your dd will get quite tired wearing them - from both a physical point of view and a sensory overload point of view - and that you should allow her not to wear them when appropriate.

I'm slightly puzzled by your comment re. sign language. "Moderate" is a defined term - something like 40 - 60% hearing loss. I have moderate loss and there is no way I would benefit from sign language. I can hear most people perfectly adequately and only have trouble in large settings, eg. parents' evenings, AGMs or if the person has an unusual accent or mumbles. I do put subtitles on the TV so the volume doesn't have to be too loud. To a certain extent I beleive I lipread but I couldn't lipread someone without being able to hear them too, if you see what I mean.

I would have thought nursery would be perfectly OK. Make sure they know that the best way to help her is not to shout or speak loudly but to speak clearly and to make sure they are facing her and not covering their mouths when they speak. Ds should also be told this.

RNID (Royal National Institute for the Deaf) would be a good starting point for advice. I can't see at the moment what you'd get DLA for - when I was young the hearing aids and consultations were all free on the NHS and I can't think of any other costs my deafness incurred.

stringbean Sun 21-Nov-04 22:30:13

Many thanks for your helpful responses. JtO, we were really encouraged by your response; its so helpful to hear from someone who has a similar hearing loss to dd and has adapted to it well (though I'm aware that it's us as a family that has to adapt - for dd it will be normal). Apparently the tests show that the quietest sounds she will hear is normal conversation; anything less than this will need to be amplified. You made a really good point about the hearing aids being tiring - its not something that had occurred to us at all; I'd been thinking along the lines that she'd just take them off at night or for sleeps, but can appreciate that it would be hard work to wear them all the time. The audiologist suggested doing baby signing with dd to enhance her communication with us; I guess if her hearing loss turns out to be worse than initially thought and aids are not sufficient, then BSL may be required (or am I getting the wrong idea here?).

DLA is something that has been mentioned to us and several references to it in the information pack we've been given, but I haven't looked into it at all; we have been trying to work out this evening if there are likely to be costs involved as a result of dd's hearing loss, but couldn't think of any either, so that's really helpful to know. Thanks as well Dingle, for the offer of help.

Mizmiz, many thanks for your reassurance from a speech & language therapist's viewpoint. I don't really like the idea of dd having to wear hearing aids, as I don't want her to appear outwardly different to other children, or for them to use it as an excuse to make fun of her, but do realise that the sooner she can start to hear speech clearly, the greater the benefit to her. Her brother has verbal diarrhoea however, so she's going to have to fight pretty hard to make herself heard!

Dingle Sun 21-Nov-04 22:50:12

As I said before I don't know at what level of hearing loss BSL would be recommended over "baby signing." Personally I think that every child would benefit from learning a system such as Makaton or Signalong. It's not just children with SENs that have communication difficulties, and if young children can pick up signing then surely when they see it in use, it's not classed as a "disability" just another form of communication.
Obviously my dd has other "issues" but at 3 she only says a handful of words but can sign 150. As her speech improves the signing seems to take a backseat. I cannot speak highly enough of signing.
I managed to get on a signing course when dd was about 6 months old and it is amazing how quicky she picks it up. I didn't have to pay for it either, it was organised through Portage.

mizmiz Mon 22-Nov-04 00:02:33

Yes Dingle, you are absolutely right.
Signing is beneficial to every child, s/n or ont, h/i or not. Whatsmore, it is easy and great fun and will not, repeat WILL NOT hinder speech and language one iota.
On the contrary, it will help it along enormously.
(Masses of research to back this up.)

Chandra Mon 22-Nov-04 01:43:58

Agree about signing, we have been using it with DS and although we have not been very consistent in teaching him (he only knows the more elemental words) it has helped him to comunicate with us even before he could 'pronounce' his first words in a recognisable way. The signs have been disapearing as the new words emerge. Good luck. you are in the right track

judetheobscure Sun 28-Nov-04 14:23:09

Just a quick response re. signing. My completely deaf aunt only signs with deaf people; with hearing people she lipreads - she is fantastic - understands virtually everything first time - the only problem is the other way as she doesn't actually speak so it's more difficult for hearing people to understand her.

I have no knowledge at all of signing and I don't think it (BSL) would have benefitted me at any stage - after all I wasn't even diagnosed with hearing loss until I was about 5. But baby signing does seem to be quite popular and beneficial among hearing babies before they have learnt to talk, so absolutely nothing to lose and plenty potentially to gain if you did signing with your dd.

I would say my hearing loss could well be the same as your dd. I can hear normal conversation when people are in the same room, but some people with more quiet voices I find difficult to hear if they are not next to me. Obviously as your dd gets older you will have a much better idea of what she can and can't hear and will be able to tailor your approach.

When I was little the hearing aid was a battery pack clipped to my dress with a wire leading up to an earpiece. I hated it. I presume your dd has a behind the ear model (or maybe an in the ear model - don't know if these are suitable for babies). If so, then all you have to do is keep her hair long and nobody will notice. I would also recommend not insisting on her sitting at the front of the class - if the hearing aids are doing their job properly then this shouldn't be necessary and will only serve to draw attention to her.

Ultimately, she should have no problem at all when she wears her aids. Which just leaves when she can't - at swimming pools (the water/environment does a pretty good job of amplifying sound) - at the beach and in bed.

stringbean Tue 07-Dec-04 16:34:56

Many thanks for your messages. We're still waiting on dd's hearing aids; apparently the aids are ready, but the moulds are not, so we've had to go to the hospital to have new ones taken, which will be a trip we have to make every few weeks. The hearing aids are tiny - and digital - so I don't suppose they'll show much until dd decides she wants moulds which are pink and glittery (apparently you can get them made like this!). I've met the early years education person who will be checking on dd's progress from now on, and she seems very supportive. She has also recommended baby signing, so we'll be looking at this more closely.

DingleAlltheWay Tue 07-Dec-04 17:24:31

Thanks for the update stringbean. It seems that things are settling down for you!
Good luck with the baby signing.

TIREDMUMMY Thu 20-Jan-05 20:22:03

I have a four year old son who was diagnosed with a bilateral moderate hearing loss about a year ago,and I have found the Deaf Childrens Society website really, really useful. It has a a message board like this and everyone is really helpful.

Jimjams Thu 20-Jan-05 21:43:57

maybe start with makaton stringbean as its a smiplified version of BSL- doesn't sound as if BSL will be needed but would be easy to up a gear to it if necessary., Perhaps start with the makaton dave video (type makaton into - it's great- and my children love it (ds1 is autistic, ds2 is normally developing)

Ds2 is now 3 and I'm starting to explain little things about his brothers autiism to him. I think young children are very accepting of differences and I suspect your son will adjust easily. Just keep explanations simple and low key and I'm sure he'll just accept it. Ds3 is 2 weeks old and doesn't bat an eyelid when ds1 starts screaming and stamping round the place (nor does ds2) - it's both boys normality so they don't question it. Your son will soon learn how to communicate with his sister. If you decide to use makaton he;ll pick it up quickly- especailly from the video - ds2 signs away to it.

Nurseries vary- ds1 (pretty severely autistic) went to a mainstream nursery with no problems at all. It was excellent and very supportive. A lot of nurseries have experience of things like makaton (or are keen to learn) so there may be some experience there already if you decided to use sign as well.

stringbean Fri 21-Jan-05 22:31:54

Thanks Jimjams. I've found out about a baby signing class locally which does BSL (although the teacher says there's very little difference between Makaton and the signs she uses as they need to be simplified for babies). The teacher is happy for siblings to attend as well, although not sure if ds will sit still for that long. Will look for the video - I have a suspicion its in the local library, so will check it out when we go there tomorrow. Have spoken to nursery and they're looking at Makaton and gathering info for when dd starts after Easter (they also have a little boy there with DS so are signing with him too).

We saw the ENT consultant yesterday, and dd has glue ear on top of her sensori-neural hearing loss; this knocks her moderate deafness down to a profound deafness, which is a bit of a blow, although perhaps not entirely unexpected. They've said grommets are an option at 8 months, but not sure how I feel about that - seems a bit early, but without intervention of some kind she will not start speaking with this degree of deafness. She's had her hearing aids for about 6 weeks now; I got the audiologist to turn them up after 2 weeks as I didn't feel they'd made any difference, and since then I've still not been convinced she is showing any real response with them, and on the strength of yesterday, that explains why. Feel frustrated that there are no further hearing tests they can do now until 8 months or so, when they can set her hearing aids accurately according to what frequencies she can hear; we have no way of being sure that she is hearing anything with her hearing aids until then.

Feel a bit depressed by it all. Lots of people keep saying that deafness is a really 'good' disability to have, how lucky we are etc that it's nothing worse when it could so easily have been, but I'm starting to find this attitude belittling, both of what dd may be up against, and our feelings as her parents. Although people are so well-meaning and want to find something positive to say, the thought at the back of my mind is 'yes, but your child is OK'. A few people who wear glasses have tried to convince me its no different, but poor eyesight generally doesn't stop you learning to talk. Dd's such a beautiful little thing, so smiley and engaging, can't bear to think she sits in a silent world, no music, can't hear the birds singing etc, although the rational part of me tells me she won't miss what she's never had. Sorry for the moan; this is miniscule compared to what so many of you have to face - and totally self-indulgent of me - but just wanted to let off a bit of steam.

TIREDMUMMY Mon 24-Jan-05 21:23:14

Hello again

I know exactly what you mean by the comment about glasses not stopping you learning!!!!
People don't react differantly to you just because you wear glasses!!
The letter from the lady who has a hearing loss was really reassuring to read, but I think if you are the parent you worry about everything, and I know that there could obviously be a lot worse that could happen. But a year on and if I think about my little boys hearing loss I could cry. I mentioned previously the Deaf Childrens Society Forum like this one, I'm listed there as SANDRAW if you fancy sounding off a bit more contact me and I'll join you!!

stringbean Tue 25-Jan-05 13:32:10

Thanks TiredMummy; it's helpful to know I'm not the only one who feels like this. I have joined the NDCS - haven't posted on their chat forums yet but will definitely have a look.

Kelly1978 Tue 25-Jan-05 13:50:47

Hi stringbean, please try not to get down about your dd's hearing.

I'm moderately hearing impaired, diagnosed at about 5 years. My parents were told that my hearing was akin to what a normal hearing person hears when underwater. Like you say, if you've never had perfect hearing, you don't know what you are missing out on. If I had the opportunity to hve normal hearing I would refuse, cos I couldn't imagine what it would be like to be able to hear all those annoying background noises that irritate my dp!

I lipread, and although I think sign is a great idea to help your dd, I think one of the best things you can do is to encourage lipreading, by making sure she can see your lips when you speak to her. She will pick it up very quickly. My children are not hearing impaired, but my daughter still lipreads, as she copies my habit of looking at people's mouths.

I dont wear hearing aids, after a break due to unrelated surgery. I got used to hearing things 'my' way, and I now can't understand with the aids. I know they aren't always the nicest thing, and it is hard having a visible reminder of it, but it is very important that others are aware of the deafness. I have an IQ of 140, but many people thought I was 'slow' because I didn't speak very clearly (due to late diagnosis), and was slow to react. Deafness isn't always a very obvious thing.

Now, I still have to tell people I am deaf, because if I don't, they can't tell. My deafness has never held me back - I can play flute and clarinet, and I am now a law student, although I mgiht have had to push to prove myself in some situations.

I realise it must be a horrible thing for a parent to have to deal with, but I hope that this can give you some positive thoughts for your daughter!

Tortington Tue 25-Jan-05 21:03:14

my daughter was diagnosed at 9 years old with being 40% deaf. the ray of hope i have for you is that when my daughter started junior school in a new area as a new kid and then had to go in whith hearing aids - the kids were fab - there was the odd one but dd's friends sorted themout for her!

also the technology these days astounds me. my dd has digital hearing aids - she got to choose the colour of the aids -which are purple - and she got to choose the colour of the moulds - which are a purple marble effect - but the choice is really wide - you can have stickers on the moulds - your fave footy team on them - and the sussex audiology dept try to be very very accomodating.

my daughter now in senior school has a "radio aid" she gives to each teacher which fits round their neck necklace stylee, and is about 2 inches squared - my dd doesnt has a booster which she fits onto her aids - but they are tiny and no one can see them. and she gets the teachers voice directly to her ears!

i hope this makes you feel a bit better - e - mail me any time you know - its still fairly new to me too!

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