My 3 weeks old daughter is deaf from both ears: heartbroken 💔

[ToughCOOKIE78]

We found out on Thursday that our precious 3 weeks old baby is deaf from both ears….we are DEVASTATED by this news and currently waiting for a further appointment to understand the extent of the issue and how to support her.

Cochlear implants have been mentioned so I’m assuming she is having sensorineural permanent hearing loss 💔although we don’t have a full diagnosis yet (could it be worse???)

Im worried that I won’t be able to give her the life she deserves, playing with kids as she should have, going to school as she should have, speak and laugh as she should have…

Please help..x

[meggiemog]

Hi there! I am sorry you have had this news, and I really hope you will get the support and advice you need from your healthcare provider. However your little one doesn't know any different. If she has been born deaf, she will not miss hearing, Only we get upset as we know what sound means to us. What she will have is heightened senses, touch, smell, taste and sight - so show her love through your smiles and cuddles. And whether children hear or not, she will still make friends. You still have to look into cochlear implants, which may really help and should be seen as a positive. You could look into signing classes too. Little ones who learn sign language early on actually communicate their needs much sooner than speech, I know this as my hard of hearing cousin taught her hearing daughter to sign before she could talk properly and she could tell her if she was thirsty or hungry or tired or sad well before she could tell her in words. Sometimes life takes you down a road you didn't expect, and you just have to see where it goes.

Good luck xx

[GRboyRiches in reply to meggiemog]

For us who can hear, yes it’s absolutely devastating, and of course, today, there is the Cochlea Implant, but it’s your daughters life, not yours, in the World of hearing, there is the deaf world, if your daughter has never heard, you must prepare yourselves for the deaf world, and learn sign, before you know where you are she will going to school and learning sign, you must not be left behind, it’s imperative you learn to interact in her world, it’s her world not yours, as sad as it seems, you will have many laughs, and meet some amazing people, don’t be on the outside, your daughter will grow up to be an amazing young lady, and if your in her world, she will love you forever, but if you chase her hearing, you could be left on the outside….love forever

[ToughCOOKIE78 in reply to GRboyRiches]

My world and her world are the same, if course I will learn to sign and I will teach her to sign but I want to give her the opportunity to speak and hear as well, because the world we live in is not ready for ‘diversity’ and ‘inclusion’ yet, so she must be ready for that. My love for her is unconditional and I will do everything in my power to support her and help her become the person she wants to be ❤️

[BAHA2]

Hi there,

You must be devastated with the news about your daughters hearing, but it is excellent that the health professionals are talking to you about cochlear implants.

I was an adult in full time employment when I lost my hearing and, I can honestly say that having my cochlear devices saved my life as I was so depressed at failing at work ho= work, home socially and especially with my family that I was suicidal. But I can honestly say that my hearing has never been better, since having my cochlear implants switched on. The good news is cochlear have a website dedicated to new users and have many volunteers more that happy to share there experiences about there cochlear journey so do not hesitate to contact them on the relevant web site for your country. I am positive things will work out much better than you could ever imagine. All the very best wishes.

[ToughCOOKIE78 in reply to BAHA2]

Oh hun, thank you so much for your message, it’s reassuring. I’m so glad to hear that implants have helped you so much and that you can live your life fully, it must have been so difficult to lose your hearing ❤️I am scared of the future but I will be strong for my daughters sake ❤️Love to you!

[Lynne-H]

Hi

I`ve no personal experience of what you are going through right now. I am on this forum because I myself am hard of hearing.

I can see that you have had some good advice from other members on here but I just wanted to say that there is a Facebook Group (UK Hearing Loss Community) of which I`m a member and I`ve noticed on there that there are Mums who have also gone through what you are going through now and will also give you lots of good advice and support.

Lynne xx

[ToughCOOKIE78 in reply to Lynne-H]

Thank you so much Lynne, I appreciate it x

[PABLR]

I am so sorry for this. One reassuring aspect is that children who have never known different and receive a cochlear implant learn to adjust to it more easily than adults, as it all that they know. I taught a student, profoundly deaf in both ears from birth, with cochlear implants and he heard perfectly, although he preferred you to be looking at him, and spoke extremely well. He was mainstreamed and did absolutely fine in everything. I don't know if he could sign - no-one else could in the school - and I never saw him sign with others. He was also bilingual (Arabic speaker, going to an international school taught entirely in English). At this point it is much harder for you that it is for your baby for whom it is absolutely normal.

[ToughCOOKIE78 in reply to PABLR]

Thank you so much for sharing, it is reassuring to hear! 😃

[Vegandreama]

I am deafblind Asperger. Please don’t worry. Just get in touch with your local signing deaf community. Being deaf is not as much of a handicap as being language deprived. This can happen if they are deprived of sign language and are unable to hear well enough to use speech. You may get told that signing will impede speach but this is not true.

Baby sign language is a good way to start It is very good for helping a baby express themselves before speech is attempted.

If you decide to go for a CI it’s important to realise that they do not cure deafness and you would do best to get one as part of a full tool box approach which includes sign language and literacy and speech in that order. The CI may help to get her on the speech banana if she is successful which does not always happen so sign is needed as back up. Teaching your child sign language can help your child to inform you if the ci is not working. All machines can break. Signing can also help her provide input as to the map which is best for her.

Choosing the right map is very important as I had a deaf and partially sighted friend whose CI made her sound phobic and neurotic which she never was before the CI which quite put me off CI until I realised it was possible that she didn’t have a good setting. She had a running battle with her stupid parents who would not allow sign language even though she clearly both preferred sign language and obviously benefited from it.

Please don’t get taken in by advocates of the aural only approach as it will likely hold your child back and the more languages she is exposed to the larger her circle of friends will be and she gets to chose wether she wants to mix with other deaf children , hearing children or possibly both. She will make more friends with the self confidence achieved by being able to express her self via sign language and literacy and if possible speech as well.

Good luck whatever you decide to do.

[ToughCOOKIE78 in reply to Vegandreama]

Hi hun, thank you so much for your very helpful reply. Yes we are doing baby signing and my husband and I have started learning BSL so that if she can have CIs she will be able to choose if/when to use them while sign as well. We want to learn as much as we can about the deaf community so that we can support her in becoming the person she wants to be.As long as she is healthy and happy we are happy, she is the love of my life 💖 brought so much joy and love to our lives!

I am a very proud momma ❤️Xx

[Vegandreama]

That’s great. Sounds like you are doing well. As long as she gets given all the tools she can make her own mind up. I have known both deaf and deafblind people who were really happy with their CI and others not so much so. Some CI seemed useless and some deaf people stopped bothering with it. So the affects of the CI vary considerably. Best of luck.

[ToughCOOKIE78 in reply to Vegandreama]

We’re still waiting for the MRI results so don’t know yet if she’s eligible to have CIs implanted…I’m so anxious about it. Thank you so much for your kindness xx