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Discussion
Posted by erod
18/11/21 06:12 PM

My daughter has mild/moderate and moderate/severe hearing loss and had hearing aids from 6 weeks. She is now 7.5 weeks and we try to put in her aids every day for at least a few minutes. It's getting better but is quite a challenge, not least getting them in. Breastfeeding is hard. Does anyone have any tips please?

Discussion
Posted by NDCS volunteer host
19/11/21 12:33 PM

Hi erod,

Thanks for your post and I'm sure you will see some replies soon.

In the meantime, if you haven't seen it already, there is some information on our website with tips on this topic here:

https://www.ndcs.org.uk/information-and-support/childhood-deafness/hearing-aids/getting-your-child-to-wear-their-hearing-aids-and-cochlear-implants/

If you need any further support, please feel free to contact our Helpline team.

Neil

Discussion
Posted by circa
19/11/21 03:33 PM

Hi erod, 

My daughter is 9 weeks old and was diagnosed with mild/moderate hearing loss. We got hearing aids 3 days ago.
I just wanted to say - I know exactly your struggles already. I am also breastfeeding- there is no chance to do that and hearing aids remain in the ears. Actually any oportunity and they fall out. With no expirience of hearing aids I have a constant doubts if the moulds fit. 

Also with baby turning the head, being carried around we just see the hearing aid constantly on the floor. 
I purchased double sided body tape. Thinking of using it to stick hearing aid behind the ear. 

I may be totally wrong (I am still in shock over diagnosi) but at this age it is more for babies to get used to hearing aids. the audilogist we had seen told us to take it easy. 

I am sending you virtual hugs. 

Discussion
Posted by erod
19/11/21 04:46 PM
Discussion
Posted by circa
19/11/21 03:33 PM

Hi erod, 

My daughter is 9 weeks old and was diagnosed with mild/moderate hearing loss. We got hearing aids 3 days ago.
I just wanted to say - I know exactly your struggles already. I am also breastfeeding- there is no chance to do that and hearing aids remain in the ears. Actually any oportunity and they fall out. With no expirience of hearing aids I have a constant doubts if the moulds fit. 

Also with baby turning the head, being carried around we just see the hearing aid constantly on the floor. 
I purchased double sided body tape. Thinking of using it to stick hearing aid behind the ear. 

I may be totally wrong (I am still in shock over diagnosi) but at this age it is more for babies to get used to hearing aids. the audilogist we had seen told us to take it easy. 

I am sending you virtual hugs. 

Hi Circa,

Thanks for your kind response. It sounds to me as though you and I have both had mixed experiences with the audiologist. We were given Phonak Stick n Stay stickers, and there is no way the aids would stay on without. However, we need to trim her hair as it sticks to her hair not the skin! Taking it off is hard too but at least they stay on. I strongly recommend you ask for some.

Our audiologist gave us no advice, except don't get them wet, and if she sleeps with them in she will be startled awake. I'm glad we seem to be doing the right thing by trying to get her used to them.

We have already had new moulds and they fit much better. Some days one goes in easily and the other not at all, other days both go in a little bit and I get feedback. I still haven't had a perfect day!

Hugs in return. It's hard when our precious babies won't have the life we expected for them, but it is amazing we have aids so quickly. I hope you receive a satisfactory diagnosis; we are waiting for ours.

Discussion
Posted by erod
19/11/21 04:49 PM
Discussion
Posted by NDCS volunteer host
19/11/21 12:33 PM

Hi erod,

Thanks for your post and I'm sure you will see some replies soon.

In the meantime, if you haven't seen it already, there is some information on our website with tips on this topic here:

https://www.ndcs.org.uk/information-and-support/childhood-deafness/hearing-aids/getting-your-child-to-wear-their-hearing-aids-and-cochlear-implants/

If you need any further support, please feel free to contact our Helpline team.

Neil

Thanks Neil. I had read the article but found it focused more on older children who are aware of their aids. Now I reread it I see more tips I can use for my baby.

Discussion
Posted by mrsp
24/11/21 07:42 PM

Hi erod,

I can't offer any tips regarding breastfeeding but what I can say is that our daughter was diagnosed with mild to moderate hearing loss & had hearing aids at 9 weeks old. We were lead by our daughter, in the beginning it felt like she was never going take to wearing them but we persevered & eventually she wore them more. Some days she didn't have them in at all, others for quite a while. She is almost 8 now and is flourishing. if you look on Etsy or Facebook you can buy headbands with loops for the hearing aids to tuck into, not sure if this would help you? If you are struggling with tight fitting moulds, you can ask audiology for some Otoferm cream. 

Remeber that you are doing fantastically, we have to learn all these things as we go along. Keep asking questions, I asked lots! 

Discussion
Posted by cuthbert81
01/12/21 05:24 PM

Hi erod and Circa,

First of all, I wanted to say you are both doing amazingly!! It's hard enough dealing with a newborn, let alone a surprise diagnosis of deafness! I really want to reassure you that even by putting the hearing aids on for a little bit each day, you're doing great.

I should explain - I have 2 boys, now 8 and 4, both deaf and diagnosed at birth. Our eldest has a severe loss on his right and profound on his left, and our 4 year old has a moderate loss in both ears. Turns out this is due to a gene called Connexin 26 that both me and my husband have and gives any children we have a 25% chance of being deaf - we had no idea!

It's a shock, you need time to come to terms with it, to get used to the sympathetic apologies from the profession, friends and family, but it really isn't something to be sorry about. Your children will have the most amazing life!

So with my now 8 year old it was all very new and scary and breastfeeding was an issue with the hearing aids (he got them at 13 weeks) so we ended up just putting them in when he was laying down or out and about in the pram. I took them out to breastfeed and some days he didn't want them in at all, we just tried again the next day.

My youngest son (now 4) was a lot more clingy and lived in a sling on me for pretty much 5 months so he wore them a lot less but we were well practiced with our first son so it was all a bit less scary.

Like Circa said, body tape was a godsend for us! We stuck the hearing aids to their head. It could get caught on their hair sometimes but as the hair doesn't actually grow where you're sticking it, it's not too bad. With my second child we bought a hearing aid headband (there's a few on Etsy) which was great whilst he was really young but as he got older he found that more annoying than the hearing aids and tape so we ditched it.

As mrsp says above, Otoferm cream is also great and we still use it on my boys ear moulds now. At first audiology gave them to me but I started buying them myself as we visited audiology less and less. It's a little pricey but lasts for ages as you use such a little amount. It just makes sure there's a good seal with the mould and the ear so that you don't get that annoying feedback sound (which annoys us more than them!).

It can be challenging once they start taking them out by themselves and I always remember the stress of losing a hearing aid in a sunflower patch (never to be found again!) but you can only do your best and keep trying to put them back in, though after a few attempts I'd leave it and try again later.

 

I feel like I'm rambling but reading you messages took me back to feeling scared and alone (this forum wasn't around when mine were little!) and wanted to reassure you that everything will be ok! My two are in a mainstream school (with an excellent deaf provision), both use speech but I have also learnt sign language (only in the last few years) which I hope will keep them connected to the deaf community whilst living in a hearing environment. 

If I can offer any other advice I would love to try and help as best I can - only from a parents perspective as I'm not qualified in any way! I've never met anyone in audiology with deaf children, so whilst their recommendations are helpful, they might not be practical!

Take care, Sarah x

Discussion
Posted by erod
19/01/22 02:27 PM
Discussion
Posted by cuthbert81
01/12/21 05:24 PM

Hi erod and Circa,

First of all, I wanted to say you are both doing amazingly!! It's hard enough dealing with a newborn, let alone a surprise diagnosis of deafness! I really want to reassure you that even by putting the hearing aids on for a little bit each day, you're doing great.

I should explain - I have 2 boys, now 8 and 4, both deaf and diagnosed at birth. Our eldest has a severe loss on his right and profound on his left, and our 4 year old has a moderate loss in both ears. Turns out this is due to a gene called Connexin 26 that both me and my husband have and gives any children we have a 25% chance of being deaf - we had no idea!

It's a shock, you need time to come to terms with it, to get used to the sympathetic apologies from the profession, friends and family, but it really isn't something to be sorry about. Your children will have the most amazing life!

So with my now 8 year old it was all very new and scary and breastfeeding was an issue with the hearing aids (he got them at 13 weeks) so we ended up just putting them in when he was laying down or out and about in the pram. I took them out to breastfeed and some days he didn't want them in at all, we just tried again the next day.

My youngest son (now 4) was a lot more clingy and lived in a sling on me for pretty much 5 months so he wore them a lot less but we were well practiced with our first son so it was all a bit less scary.

Like Circa said, body tape was a godsend for us! We stuck the hearing aids to their head. It could get caught on their hair sometimes but as the hair doesn't actually grow where you're sticking it, it's not too bad. With my second child we bought a hearing aid headband (there's a few on Etsy) which was great whilst he was really young but as he got older he found that more annoying than the hearing aids and tape so we ditched it.

As mrsp says above, Otoferm cream is also great and we still use it on my boys ear moulds now. At first audiology gave them to me but I started buying them myself as we visited audiology less and less. It's a little pricey but lasts for ages as you use such a little amount. It just makes sure there's a good seal with the mould and the ear so that you don't get that annoying feedback sound (which annoys us more than them!).

It can be challenging once they start taking them out by themselves and I always remember the stress of losing a hearing aid in a sunflower patch (never to be found again!) but you can only do your best and keep trying to put them back in, though after a few attempts I'd leave it and try again later.

 

I feel like I'm rambling but reading you messages took me back to feeling scared and alone (this forum wasn't around when mine were little!) and wanted to reassure you that everything will be ok! My two are in a mainstream school (with an excellent deaf provision), both use speech but I have also learnt sign language (only in the last few years) which I hope will keep them connected to the deaf community whilst living in a hearing environment. 

If I can offer any other advice I would love to try and help as best I can - only from a parents perspective as I'm not qualified in any way! I've never met anyone in audiology with deaf children, so whilst their recommendations are helpful, they might not be practical!

Take care, Sarah x

Thanks mrsp and Sarah for your kind and supportive messages. I thought I'd give an update for you and Circa. 
Baby is 16 weeks and we're in the thick of hospital appointments for a diagnosis. Regarding the hearing aids, I pushed to see the audiologist again who turned off the feedback and trimmed the tubes to the correct length, so need for stickers. We had glitter moulds and they seem much softer and fit well. 
We started Tiny Talk signing classes today.

Discussion
Posted by circa
19/01/22 09:16 PM
Discussion
Posted by erod
19/01/22 02:27 PM

Thanks mrsp and Sarah for your kind and supportive messages. I thought I'd give an update for you and Circa. 
Baby is 16 weeks and we're in the thick of hospital appointments for a diagnosis. Regarding the hearing aids, I pushed to see the audiologist again who turned off the feedback and trimmed the tubes to the correct length, so need for stickers. We had glitter moulds and they seem much softer and fit well. 
We started Tiny Talk signing classes today.

Hi Erod and others 

Happy New Year!
 
I would also like to thank people that replied. It means a lot! 
 
Also a quick update on my situation. About a month ago we had an appointment with paediatrician based in children development centre. It was more of a check and for obtaining referrals for more appointments.
 
They are now also looking for a reason behind my daughter’s condition. Two were mentioned:
  1.  I had an infection whilst pregnant. I explained that I can’t recall any. I was than told there was possibility I was asymptomatic.
  2. Genetic
 
Whole that appointment was draining. I left it quite depressed as I was constantly reminded that there are sometimes associated with hearing loss other health issues… I am aware that if they are any the best is to treat them asap - but a thought of something else being potentially wrong makes me really upset. 
 
Tomorrow my daughter has an appointment for the blood work.
 
Last week, I also had audiology appointment. it was more of a general catch up on situation. They said they won’t be doing any hearing assessments until my daughter is around 8 months old. 
 
I (or rather my daughter) have now assigned lovely Teacher of the Deaf. This Lady is really hands on - and very supportive in the same time. 
 
We also had the glittery moulds (pink and silver). Pink ones go very well with my daughter’s pink hearing aids. I asked for the next lot to be also glitter pink but they arrived yesterday and they are standard transparent. Maybe they run out of glitter (Brexit ? 😉) 
 
Following conversation with TOD we are trying for little one to wear hearing aids as much as possible. I am using tape everyday. They finally seem to stay in.
 
Random question- but is there functionality to send private messages on the forum. Or the only option is to communicate through thread?
 
Apologies for my rubbish gramma - English is not my first language and as you can tell - it is far from perfect :)
 
All the best,
Circa
 
Erod, please keep the updates coming. Please let us know what tou thought of Tiny Talk classes. Our children are similar age (mine was 4 months on Saturday) and hopefully we will be able to share some tips over the time.
Discussion
Posted by cc ndcs volunteer host
24/01/22 05:38 PM
Discussion
Posted by circa
19/01/22 09:16 PM

Hi Erod and others 

Happy New Year!
 
I would also like to thank people that replied. It means a lot! 
 
Also a quick update on my situation. About a month ago we had an appointment with paediatrician based in children development centre. It was more of a check and for obtaining referrals for more appointments.
 
They are now also looking for a reason behind my daughter’s condition. Two were mentioned:
  1.  I had an infection whilst pregnant. I explained that I can’t recall any. I was than told there was possibility I was asymptomatic.
  2. Genetic
 
Whole that appointment was draining. I left it quite depressed as I was constantly reminded that there are sometimes associated with hearing loss other health issues… I am aware that if they are any the best is to treat them asap - but a thought of something else being potentially wrong makes me really upset. 
 
Tomorrow my daughter has an appointment for the blood work.
 
Last week, I also had audiology appointment. it was more of a general catch up on situation. They said they won’t be doing any hearing assessments until my daughter is around 8 months old. 
 
I (or rather my daughter) have now assigned lovely Teacher of the Deaf. This Lady is really hands on - and very supportive in the same time. 
 
We also had the glittery moulds (pink and silver). Pink ones go very well with my daughter’s pink hearing aids. I asked for the next lot to be also glitter pink but they arrived yesterday and they are standard transparent. Maybe they run out of glitter (Brexit ? 😉) 
 
Following conversation with TOD we are trying for little one to wear hearing aids as much as possible. I am using tape everyday. They finally seem to stay in.
 
Random question- but is there functionality to send private messages on the forum. Or the only option is to communicate through thread?
 
Apologies for my rubbish gramma - English is not my first language and as you can tell - it is far from perfect :)
 
All the best,
Circa
 
Erod, please keep the updates coming. Please let us know what tou thought of Tiny Talk classes. Our children are similar age (mine was 4 months on Saturday) and hopefully we will be able to share some tips over the time.

Hi circa

I note your query on sending private messages between members of Your community.  If you would like to connect with other members offline, please visit our Facebook groups (https://www.facebook.com/NDCS.UK/) or contact our Local Groups team ([email protected]).

Hope this helps.

Kind regards

Discussion
Posted by erod
24/01/22 07:29 PM
Discussion
Posted by circa
19/01/22 09:16 PM

Hi Erod and others 

Happy New Year!
 
I would also like to thank people that replied. It means a lot! 
 
Also a quick update on my situation. About a month ago we had an appointment with paediatrician based in children development centre. It was more of a check and for obtaining referrals for more appointments.
 
They are now also looking for a reason behind my daughter’s condition. Two were mentioned:
  1.  I had an infection whilst pregnant. I explained that I can’t recall any. I was than told there was possibility I was asymptomatic.
  2. Genetic
 
Whole that appointment was draining. I left it quite depressed as I was constantly reminded that there are sometimes associated with hearing loss other health issues… I am aware that if they are any the best is to treat them asap - but a thought of something else being potentially wrong makes me really upset. 
 
Tomorrow my daughter has an appointment for the blood work.
 
Last week, I also had audiology appointment. it was more of a general catch up on situation. They said they won’t be doing any hearing assessments until my daughter is around 8 months old. 
 
I (or rather my daughter) have now assigned lovely Teacher of the Deaf. This Lady is really hands on - and very supportive in the same time. 
 
We also had the glittery moulds (pink and silver). Pink ones go very well with my daughter’s pink hearing aids. I asked for the next lot to be also glitter pink but they arrived yesterday and they are standard transparent. Maybe they run out of glitter (Brexit ? 😉) 
 
Following conversation with TOD we are trying for little one to wear hearing aids as much as possible. I am using tape everyday. They finally seem to stay in.
 
Random question- but is there functionality to send private messages on the forum. Or the only option is to communicate through thread?
 
Apologies for my rubbish gramma - English is not my first language and as you can tell - it is far from perfect :)
 
All the best,
Circa
 
Erod, please keep the updates coming. Please let us know what tou thought of Tiny Talk classes. Our children are similar age (mine was 4 months on Saturday) and hopefully we will be able to share some tips over the time.

circa, I will email the local teams so if you do too they can hopefully put us in touch