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Discussion
Posted by lucy
16/12/20 08:48 PM

Hi,

A week ago after 4 different tests, my daughter was diagnosed with severe to profound hearing loss in both ears. This diagnosis is from birth. She is now 6 weeks old. Emotionally trying to hold myself together, and accept this news. My partner is in complete denial and I feel quite alone. Is there stuff I can be doing? I haven't stopped talking reading singing etc with her. She's my third daughter and I'm still doing everything I did with them, but can I be doing more? 

Im really worride about our future. will she learn to talk? Are implants her best chance? Should I be learning to sign now? how do I explain to my other children the situation? 

any positive stories, advice, tips or experiences much appreciate.

thank you

Lucy

Discussion
Posted by Claire ndcs moderator
22/12/20 03:21 PM

Hi Lucy,

Thank you for starting this thread.

Being told that your child has a hearing loss can come as a shock and there can be a lot to take in at first. It sounds like you've been through a lot recently and we can certainly appreciate how alone you’re feeling right now.

It is really positive that you are already reaching out for support and information and this will make a big difference. With the right support, we believe that deaf children can achieve anything and we’re here to help.

We have lots of information for parents who’ve just found out that their baby has a hearing loss, including lots of newly diagnosed stories from parents covering topics such as dealing with feelings and communicating with your child.  

And please also consider signing up for our online events. You may find our Supporting Parents New To Hearing Loss events particularly useful at this time. 

You’re also very welcome to contact our Helpline team if you’d like any information or support.

Take care,

Claire

Your Community moderation team  

Discussion
Posted by natalie
11/01/21 12:48 PM

Hi Lucy

My little boy was diagnosed at 3 weeks old profoundly deaf both ears. 

At first I was in complete denial I wouldn't talk about it without bursting into tears I really struggled he was my first born and we had no deafness in the family. 

He had cochlear implants at 10 months old and they were turned on at 11 months old it is the best decision me and my husband ever made. He is 3 in April and talks like any normal 3 year old and he has took everything in his stride. 

The journey was long with hospital appointments and is very overwhelming but as soon as you see them hear for the first time it is the best thing ever.

We learnt some sign language but since our little boy could hear we stopped using sign as much

Natalie 

Discussion
Posted by nicola
11/01/21 01:13 PM

Hi Lucy, I think I'm in a similar situation to you, just wanted to say I can completely relate to how you're feeling and you're not on your own. My little girl is now 13 weeks old and was diagnosed with severe to profound hearing loss in her right ear and moderate to profound loss in her left ear when she was 5 weeks old, so at the same age as your daughter. I see you posted a few weeks ago now, is she suitable for hearing aids? Have you been put in touch with a teacher of the deaf? Our audiology department and our teacher of the deaf have been so supportive. I hope your partner is coming round to the situation now? We've been told that hopefully our daughter will be able to speak, possibly with the help of cochlear implants. We have started learning some signs, we're doing Sign Supported English using BSL signs, instead of full BSL as we want to encourage Ruby to learn spoken language but hopeful that using signs may help her and give her another communication option as she grows. Ruby has had her hearing aids for nearly 3 weeks now and they're a challenge but a positive step forward. We don't know how much she can hear with them, your baby girl may be the same if this is the right treatment for her, but audiology can guide you. We've been told it's important for her to wear them as much as possible to access as many sounds as possible and stimulate the nerves in her ears so we're taking hope from this. We're now in the process of undergoing tests to try to find our why she was born deaf, are you going through this too? Cochlear implants may be on the cards for us but we were told she needs to get used to wearing hearing aids first as she would only be considered if she can tolerate wearing something on her ears. She's tolerating them really well, they don't bother her. From what I understand the process to possible cochlear implants is very in depth and dependent on different things, I don't know the ins and out of this yet but there is a lot of assessment that goes on and it won't happen just yet. For us right now it's about her hearing aids and seeing how she goes, having the rest of the tests she needs and keeping in touch with audiology (every 2 weeks for new moulds as their ears grow so quickly at this age!). I've found a few people to talk to on Instagram who share their stories, I've found it really helpful to talk to/follow people's stories who are further down the line than us. In the past week a few people have reached out to me on there and said it does get easier etc, and their children have cochlear implants now so it may be useful for you to have a look on there, if only to find out a bit more about cochlear implants and see some real stories. Ruby is our first baby so I'm not sure about siblings, but would they perhaps like to learn signs with you? It could be fun, we've started to explain to our nieces about Ruby and I'm looking at some children's books which feature deaf characters or talk about deafness. There are some really nice signing books out there too. We've got some by 'childs play' in the 'sign about' range so 'sign about getting ready' 'sign about play time' etc and a 'my first animal signs' book. My mum has a 'my first signs' book from the same range which is nice too. They have picture and descriptions of how to do the signs which is great, you may be able to get your other children involved this way? Anyway, sorry if this isn't helpful, I just understand some of your worries so wanted to send a message. Happy to chat more if you want :)

Discussion
Posted by alex
11/01/21 01:34 PM

Hi - Firstly well done for reaching out. Best thing you can do is explore the options. It's really overwhelming when this happens. My daughter is 3 now and was identified at birth as having severe-profound hearing loss in both ears. She wears hearing aids in both ears and is doing really well with speech and language. We were offered the option of cochlear implants but decided to carry on with hearing aids for the moment since she is doing so well. I struggled with the decision but I want to emphasise that each families case is unique and you can only do what you think is right.

We have learnt sign supported english to compliment speech and this is really helpful for when she is in the bath for example and cannot wear her hearing aids. In addition I have found that there are times when she actively choses to take the hearing aids off to have a break (listening fatigue is real!!) and then it is also very useful to continue to communicate. In my area the local council supports us by providing 1-2-1 family signing classes (pre CVD) - It might be worth asking your teacher of the deaf about this as I should think your other children would enjoy the classes too. 

Overall I'd say be kind to yourself. I put a lot of pressure on myself to get everything right and at the end of the day your little girl also needs the normal things right now - singing, cuddles, reading to her - it's all relationship and communication building regardless. You sound like you are doing a fantastic job! 

Discussion
Posted by sparkle
11/01/21 01:43 PM

Hi Lucy,

I hope you are okay.  

I just wanted to reassure you that you aren't alone and there are lots of parents in a similar position to you.  

Like any baby your daughter will watch your face intently and so its important to continue to talk and sing to her as she will read your facial expressions, body language and in time learn to lip read.  

Our daughter had cochlear implants at 4 years old after having hearing aids.  Cochlear implants are amazing.  Our daughter can hear all sounds in her own way and has very good speech.  We know other deaf children who have had cochlear implants from birth and they are actually fluent in two languages!  One of the things we were worried about was music as our daughter loved Moanna before she completely lost her hearing but since her implants she can enjoy singing and dancing to music again.  

When she was a baby we signed up to baby sing and sign which was good and we also use basic british sign language to communicate for times when she isn't using her cochlears or when we need to communicate over longer distances for example in the playground.

I hope this helps 

Discussion
Posted by catherine
11/01/21 01:56 PM

Hi Lucy, 

I was in exactly your position two years ago. I too was devestated, I didn’t know how to process the diagnosis let alone where to start looking for help....so you are one step ahead of where I was. the NDCS is a fantastic support network and have a wealth of knowledge.

we made the decision to move forward with implants for Lewis, the journey seems to take forever with never ending hospital and audiology appointments. 

Lewis worm hearing aids for a year, they didn’t give him any hearing but got him used to having something on his year. I was so scared to go out as I knew people would look at him. I joined a baby group called Tiny Talk and started to learn sign language and also went to the local deaf school for lessons.

I remember going to my first deaf school coffee morning....I just cried the whole time. Everyone was so lovely and Lewis loved watching them sign to him....he was only13 weeks old.

Lewis turned two in October and we can’t stop him talking! :) he speaks way better than his brother did at two. He have kept up the signing, if for any reason the implant doesn’t work or the batteries go flat we need to have a second way of communication. His 3 1/2 year old brother is learning too.

the scary part was waiting to see if he was eligible, sadly not all children are for a variety of reasons.  I can say we have no regrets at all. We know he will always have something a little different but that is now part of Lewis, we wouldn’t have him any other way.

big hugs 

victoria x 

Discussion
Posted by andi
12/01/21 07:54 PM

Hi Lucy,

there are so many parents going through the same situation, I find it great to talk to others, lockdown has meant we couldn't meet many parents but hopefully we will someday soon. we were told our son was profoundly deaf when he was only a few weeks old after 3 hearing tests, he had hearing aids but after further tests we found out these had no benefit and recently found that in Scotland Cochlea Implants would also not benefit. When he was a couple of months old we started our journey with NDCS where we were able to join family sign classes and since the first lockdown we continued to teach ourselves and now have weekly video chats with our Teacher Of the Deaf to help us further.

We are now waiting on our referral from Manchester for a review of CI or ABI to see if he could have any benefit from these options. We just feel that you can never have too much information, then we can decide what the best option is for our son and how we proceed. 

I would definitely recommend learning sign as a family, even if your child doesn't need this to communicate it. babies can sometime sign there needs before speaking them and also they can communicate with other that may be use sign. It's amazing how quickly our nieces and nephews pick up sign, much quicker than us :) 

Discussion
Posted by muddybaba
28/01/21 12:12 PM

Hi Lucy

our daughter was diagnosed with profound hearing loss in both ears which turned out to be because both my husband and I carry the connexin 26 gene.

i really just wanted to give you some positivity. Our daughter is 2years old now and has started a mainstream nursery. Her speach and language development is as good as a child of normal hearing and she's doing really well.

she wore hearing aids to begin with (as much as we could keep them on her!) and then had bilateral cochlear implants at 8 months old. By the time she had her first birthday she was hearing exceptionally well with her CIs on. They are brilliant and I cant emphasis enough how fantastic they are. They give really good clear sound. Hearing aids amplify and as I understand it better for those with a milder hearing loss. 

as a family we had 10 BSL lessons early on, which was great fun. Then my daughter and I attended baby singing and signing classes, which are really popular for all children, regardless of hearing ability. We attended Tiny Talk and both of us love it. 
she quickly picked up the sign for milk! Of course Milk!! And before you know it they are user a few signs then a few more, ive lost count now how many we use, well over 150, and it's never felt hard, just fun. The signs for animals and fruit and veg etc are very easy to learn and you don't need to learn many at this stage after all. However, with CIs implanted as I said she is learning to talk just as well as any other child but signing is easier for them so I've found I've been able to have amazing communication with her from a very young age. 

dont be afraid. The technology to support your child is out there and getting better all the time.

she will be ok and so will all of you. x