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Loresh

Parent of a child with single side deafness - Introduction

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Hi everyone. We just discovered that my son, who turns 8 end of December, is deaf in the left ear. He was born premature and his cochlear and auditory nerve did not develop. He started grade 1 this year and started complaining of his ear not working well.

Our ENT wants us to consider the Bonebridge for him. Please please can someone tell me about it. I am so confused and still trying to come to terms with this. I am so afraid of him having surgery for the implant.

Please help me and advise me through this. My Daniel is from a set of triplets. One of my little ones passed away from organ failure a month after birth. His brother had eye surgery when he was three and now I learn that my Daniel has had hearing loss since birth. 

I would love to hear from everyone.

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Hello @Loresh and welcome to HearPeers!

 

@Ivana Marinac has bonebridge do I am tagging her for you.

Wishing Daniel the very best on his hearing journey.

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Hi Mary Beth. I am so relieved to be a part of this community. I am just confused and so afraid of choosing the wrong device for my little one. Also in a state of shock. Feeling like a really bad mum not to have any idea that he could not hear in one ear. We had no problems with speech development or any sign. 

Thank you. I truly need support through this and I am very grateful to be here.

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I am glad you found this @Loresh.  And thrilled to hear how well Daniel is doing.

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So sorry to have posted this so many times.

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No need for apologies at all.  We are a friendly group.  Welcome.

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HI @Loresh  welcome you are definitely not alone. So please feel free to write as much as you like we will for sure be listening 

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@Loresh

Have you seen this?

 

 

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Good Morning from my side. It is almost 6am here. Thanks for this Mary Beth. We briefly tried the Adhear at the audiologist's rooms. She felt that it may not be clear enough for him. Seeing this, I think I should ask her for a trial.

I read some of the posts here of the post op recovery for th Bonebridge and I am worried about my little one being in pain. It just freaks me out to think he will have the device in his skull. I have all these fears. 

I am so confused right now. I am not sure if I am just being irrational over this or reacting like a parent would. Thank you for this video.

I have people tell me during the week that its no big deal if he is deaf in one ear because he should just use his other ear, I should leave him as is because it now makes him seem disabled and have even been told that I should think of putting him in a special ed school. I am just frustrated at the comments.

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Thank you Kara. I feel so out of my depth right now. So many mixed emotions, so many questions and I just felt so alone. Trying to understand what it has been like for Daniel all this time, and worried about the impact this has for his future. I am gladnto be here. I hope my questions dont sound silly.

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@Loresh

Give yourself time to gather info and consider what is best for Daniel.  You will know what is best.

My hearing history is very different than Daniel’s but I did spend 24 years hearing only in one ear.  It is limiting.  In groups I always had to position myself in a strategic position. Walking with others became a dance of moving so my good ear was toward my companion.

 

Hearing with access to sound from both sides is much easier.

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He is keen to hear with both ears and is excited about this. I just am so fearful of him having the bonebridge. How safe is it for kids and will there be any issues as he grows? I am worried about him being in pain. Mary Beth I am just very afraid. 

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@Loresh

Your feelings are definitely understandable.  Is it possible to trial the ADHEAR first?  

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I contacted the audiologist today and asked her if we could have the adhear for a week. Mary Beth I already feel so guilty for this and not even noticing something was wrong. I just don't want to make the wrong decision. My instinct right now says try something non surgical first. 

I really want to connect with parents or anyone who can share their experiences with me. And I guess I need a hand to hold onto along this journey. Feeling lost and confused and people here seem to have little or no understanding.

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I want to know if other parents felt the way I did. Or am I just overly sensitive? Are my fears and anxiety irrational? Am I the only parent that has felt so devastated to learn of their child's hearing loss? I was told by a colleague that it is not a big deal. He has one ear that he can hear from so why am I so emotional. 

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@Loresh

I believe many many parents experience the same feelings as you.

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I was even having these feelings when they told me I was a candidate for the CI! My mom said to me you have nothing to lose. Which is true. So I took the plunge! I know the devices are different but I would say it has changed my life! It is the best thing ever! I was unable to talk on the phone or hear the radio or any music for that matter. It all has changed. For your sons condition as Mary Beth has mentioned it is limiting with one ear. That’s why I got my second ear done as well. All I can say is WOW! Two ears are way better than one!!

I have four kids and I totally understand that you are hesitant and scared. I have been there. It’s scary to think your child will be in pain. Yes it is. But I have always been blown away at how quickly kids bounce back. When my son broke his elbow at age 5 he had to have surgery to fixate the bone.   He was in pain for one day! Then he wanted to run around with the others.

Go with your gut. Do what you think is best. Keep the questions coming! No question is too silly. 

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I am so glad I found this forum. I can't tell how how relieved I feel to have people to chat with. I appreciate the responses and more so, knowing that I am really not alone.

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Hi @Loresh and a warm welcome to HearPeers. I started losing my hearing as a young adult. My mom was so devastated when I told her that I was losing my hearing. Even when my ears had gotten so bad that I qualified for 2 CIs, she was against that route since it would require an operation. Even in the days leading up to the surgery it was like she was overwhelmed and I'm an adult! Moms will be moms and so it is totally understandable that you're being flooded with emotions. You want the best for your son and you don't want him to be harmed.

Fast forward to almost 2 months after surgery, my mom is so happy that I went ahead with the surgery. I'm hearing better than I have in almost 20 years and my true personality is blossoming once again. 

So take your time. Do your research. See if you can trial the device as Mary Beth suggested. 

Be assured that you're not a bad mum. You just want to make sure you're making the best decision for Daniel. Take your time. 

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