Son has moderate hearing loss, struggling with diagnosis

sheislisamarie · June 2014

Hi everybody,

I just had my first child back on March 19th, and his name is Maximilian. He took the newborn hearing screening on four separate occasions as the tests never resolved - meaning he never failed, but he never passed. We never got the "refer" notification, but were told to go ahead and escalate to a local medical center to take the ABR test to ensure nothing was wrong. My pediatrician hadn't ever seen this before and we were both convinced he just had a big wax build up blocking everything, but that wasn't the case. Last Tuesday, the ABR test confirmed that our son has permanent moderate hearing loss in both ears and will need to wear hearing aids.

It's been incredibly hard news to take because we didn't have any reason to expect this whatsoever -- it doesn't run on either sides of our families, and I didn't have any of the health complications that could lead to it during pregnancy. Now tomorrow we're going to have the moldings fitted for his ear and see an ENT. He’ll likely be in his hearing aids by middle of next week.

It's all been incredibly fast, and I'm having a terribly hard time dealing with it. I've found myself internally quite mad at the doctor that gave us this diagnosis (though she's a very kind and caring woman who obviously means no harm), and I'm having a hard time wanting to talk to the coordinators that are going to establish early intervention programs for us. I've tackled everything and set up all the necessary appointments with both, but I'm just so hostile toward the entire situation because I think I'm just in denial about it.

And I hope I don't seem ungrateful, rude, or anything else in that realm. I had three miscarriages before this pregnancy, so we look at our son and see a blessing. Not an hour goes by that I don't look at him and think what a crazy miracle it is that he's here with us at all. But I get so sad at the thought of his diagnosis. Not because he has hearing loss or will have to wear hearing aids, but because I fear the social ridicule from his peers. I worry about his ability to make good friends, being made fun or bullied in class, having a difficult time when dating begins, etc. I’m sure this is a fear of other parents on here and something you’ve struggled with at some point during your child’s upbringing, so hopefully there are some words of encouragement to be shared.

I suppose I’m looking for support on two fronts here - I need advice on what to expect from parents who have a child with hearing loss and wear hearing aids, and I also would love to hear how other parents have dealt with a surprising diagnosis. I know that all things considered, this is a very manageable health issue for our son. His full range of hearing will be restored to 100% with hearing aids, but it’s still very sad for us and difficult to understand and accept.

Thanks for reading.

funchicken · June 2014

I don't have experience with hearing loss, but I wanted to say welcome and congratulations. He's adorable

Have you thought about talking to someone to help you cope with this? Therapy really helped me when we were going through the process of getting a diagnosis for DD1.

hopecounts · June 2014

I have a friend whose little girl has moderate hearing loss.

Like your son it was discovered early and she has done speech and hearing aides since she was very little.

At 5 her hearing loss is not at all noticeable as long as she has her hearing aides in (since of course she can't hear if they aren't). Her intensive speech therapy has helped her have normal sounding speech, she is a social butterfly, has lots of 'best friends' and is always going to a friends house or having a friend over.

So don't project into the future do what you can to maximize his success right now and take it stage as it comes.

You are grieving which is 100% normal so hang in there and just be sure you don't get stuck. f

bumpuser511563 · June 2014

Welcome to our board!

I just want to say you have an adorable baby boy!

DS has ASD so I can relate to a lot of the emotions and feelings now and into the future.

I was angry the 1st time DS was evaluated with EI and the 1st time DS was evaluated by the psychologist. The 2nd and 3rd times I was hoping his ASD disappeared after lots of hours of therapy. Then I cried myself to sleep some nights through out the pass four years. DH was the last to be on board with all that I was doing for DS.

We got behavioral therapy through DS for family therapy for the 3 of us (DH, myself and DS). It has been a great help to DS and I. DH doesn't like to go.

Assembly_Reqd · June 2014

We also had problems getting pregnant and were about to do IVF when I got pregnant. When Nate was born he had a lot of stuff going on. We had a geneticist at his bassinet within 10 hours of him being born. So we were already in complete shock (had a CVS) to get not only a genetic diagnosis, but a laundry list of other things "wrong" with our son that could not be "fixed'. I am glad we didn;t do IVF. I would have been super pissed if I paid for all this on top of everything!

The technician told me on the day we were having the car seat test to go home from NICU that she tested his hearing twice and he needed to be seen again. I was like "fuck it, that shit can be fixed" and moved on. I was on autopilot.

I got really pissed later when I realized I was being forced to learn a whole new language (ASL) and culture (Deaf). I didn't ask for this shit on top of his other issues and I certainly didn't wanna hang out with a bunch of people who I couldn't even talk too.

Nate being deaf (hard-of-hearing) is a Blessing in disguise.

He goes to our local school for the deaf and learning ASL has helped us communicate with him better. Our audiologist initially said he probably would refuse to wear the hearing aids since his loss is mild-moderate. NO one ever referred us to the School for the Deaf. According to EI he wasn't "deaf ". Our vision therapist told me to call them. Best decision I ever made.

No one could have guessed he would have such huge problems producing speech. He hears really 'well' but can't talk! ASL is his way of telling us what is on his mind. I encourage you to see if your state school for the deaf has a Family Education department like ours. (Maryland) I have made wonderful parent friends there and all our kids have stuff hanging from their ears!

Honestly, bullying happens to pretty much everyone at some time. You cannot worry about it now and it is not productive.

Assembly_Reqd · June 2014

Feel free to PM or give a call out if you have any questions. And Welcome!

sheislisamarie · June 2014

Thank you all so dearly for the responses. It has really helped me understand a bit more about where all these emotions are coming from and how to handle this in the future.

@ mrszee2b - I haven't thought about seeking therapy yet, but I think I might if the feelings continue. I think that I'm in the grieving process and that anger is just a passing portion of this. We met with the doctor that gave the diagnosis today and it was a complete 180 in how I've felt over the last few days. I had a wonderful time talking with her and didn't get upset in the least. It's not to say I won't still have bad days in the future, but I think (HOPE) that I'm getting there!

-auntie- - What you said about those who experience loss or have trouble TTC made so much sense. I think I feel like...haven't I already been through enough? How could I get this on top of all the loss and heartbreak? But we had a really productive appointment today with the doctor that gave the diagnosis in which we got to try on some sample hearing aids on, and I feel a lot less anxious / sad / angry about everything. Well, at least this evening.

But I think we'll be making progress. Thank you so much for the response.

sheislisamarie · June 2014

hopecounts said:

I have a friend whose little girl has moderate hearing loss.
Like your son it was discovered early and she has done speech and hearing aides since she was very little.
At 5 her hearing loss is not at all noticeable as long as she has her hearing aides in (since of course she can't hear if they aren't). Her intensive speech therapy has helped her have normal sounding speech, she is a social butterfly, has lots of 'best friends' and is always going to a friends house or having a friend over.
So don't project into the future do what you can to maximize his success right now and take it stage as it comes.
You are grieving which is 100% normal so hang in there and just be sure you don't get stuck. f

I realized after I posted the last comment I should quote in responses haha. This is really great feedback. You echo a bit of what the doctor said today - he's going to follow our cues on personal feelings about his hearing aids. If we feel sheepish about them and he picks up on that, he's going to have issues with them, too. We need to be a source of strength and build a foundation for him to feel proud of who he is, each and every single thing about him. I think things are going to be cleared up tremendously once he finally has the hearing aids and we get started on that chapter of his life. I think right now it's fear of the unknown on my part.

sheislisamarie · June 2014

ClaryPax said:

I had a surprise diagnosis with DS when he was in utero. I don't want to go into all the details but it involved fetal surgery. I never knew if I was going to wake up one day and not find a heartbeat. It was an extremely difficult time as it also involved the death of his twin.
He is now 3.5 and has slight hearing loss. He was in the NICU and failed the infant hearing test. I was told he was fine for language acquisition and now find out that he needs speech therapy. I am just so mad that everyone brushed off my concerns and suggested that we do nothing except testing without a plan in place since he was "fine for language acquisition." And now we have to do speech therapy. Where if they had suggested tubes or a hearing aid maybe we could have prevented this. It is for, I think, middle ear fluid.

Oh my goodness, you absolutely had a rough go. I'm so sorry to hear about the hardships you faced with your little one getting here.

What a difficult time that must have been for you and your family.

I think we are able to hedge off some of the issues you seem to have run into with not having help putting a plan in place after all of the testing. I actually have no idea what to do, but Seattle (where I live) has a tremendous program in place for those hard of hearing. In fact, our doctor made all the appropriate calls and we have someone who is a family coordinator from the county coming to our home tomorrow to establish early intervention programs for us and review our options for providers. She's with us until Max is 3-years-old and is completely free for us. I have no idea what to expect, but I'm thankful that these programs and people are in place to help us because I would have no idea what to tackle first without their guidance.

sheislisamarie · June 2014

Assembly_Reqd said:

We also had problems getting pregnant and were about to do IVF when I got pregnant. When Nate was born he had a lot of stuff going on. We had a geneticist at his bassinet within 10 hours of him being born. So we were already in complete shock (had a CVS) to get not only a genetic diagnosis, but a laundry list of other things "wrong" with our son that could not be "fixed'. I am glad we didn;t do IVF. I would have been super pissed if I paid for all this on top of everything!

The technician told me on the day we were having the car seat test to go home from NICU that she tested his hearing twice and he needed to be seen again. I was like "fuck it, that shit can be fixed" and moved on. I was on autopilot.

I got really pissed later when I realized I was being forced to learn a whole new language (ASL) and culture (Deaf). I didn't ask for this shit on top of his other issues and I certainly didn't wanna hang out with a bunch of people who I couldn't even talk too.

Nate being deaf (hard-of-hearing) is a Blessing in disguise.

He goes to our local school for the deaf and learning ASL has helped us communicate with him better. Our audiologist initially said he probably would refuse to wear the hearing aids since his loss is mild-moderate. NO one ever referred us to the School for the Deaf. According to EI he wasn't "deaf ". Our vision therapist told me to call them. Best decision I ever made.

No one could have guessed he would have such huge problems producing speech. He hears really 'well' but can't talk! ASL is his way of telling us what is on his mind. I encourage you to see if your state school for the deaf has a Family Education department like ours. (Maryland) I have made wonderful parent friends there and all our kids have stuff hanging from their ears!

Honestly, bullying happens to pretty much everyone at some time. You cannot worry about it now and it is not productive.

Haha, that's really, really good advice - thank you. Also, I love your attitude about all of this. haha.

What I can laugh about now is the irony that a friend of mine throughout pregnancy kept trying to get me to give a try at "Signing Time" with our son when he arrived, which I dismissed every time she brought it up because, let's face it, I'm never EVER going to need that. At all. And now look at us. I hate it when that girl is right. :P

One of the programs that's being presented to us tomorrow by our family coordinator is going to include a speech + signing program that we might decide to take. We have the option to do speech only, speech + signing, or signing only (not a good idea for our situation per the doc based on his level of hearing loss). I'm not sure what the schooling future is going to look like for this little guy, but I'll see what kind of deaf ed programs or schools there are. That's a good option for us.

Oh, and you're right about not worrying about the bullying for now. It's really not doing me any good, and making this whole acceptance portion of the grieving process a bit harder, I suppose.

khaze · June 2014

I was just browsing Bump boards and came across this and wanted to give you my input. I was diagnosed with moderate degenerative hearing loss when I was 12 years old. At that point, the doctors basically told me, my hearing will progressively get worse until it is gone. They had no idea how long I would have hearing, etc. I was devastated at that point because all I could picture was how my grandparents' hearing aids looked and I was scared that I would never have a normal teenage life.

At 16, I was at the point where I needed the hearing aids. I'm 25 and still wear hearing aids, although my hearing is gone in the highest frequency they test for. I will probably need cochlear implants in the next 10-15 years. I can tell you that I never was teased or missed out on friendships/dating, etc because of my disability. In fact, it was the opposite. If someone found out I wore hearing aids, there was a lot of curiosity about it. I understand that my situation is not exactly what your son will have as he has started a lot younger than I did. But, if you are concerned about teasing, etc, you will be shocked at some of the hearing aid models available. You may want to look into something completely in the ear and hidden when he starts school.

In the end, you are doing the best thing you can right now. He is going to grow up without any speech issues because you are getting his hearing taken care of right now. I am extremely thankful that my son did not get any of my hearing issues, but it was determined to be genetic, so there is no telling if any of my future children may have the issue.

Best of luck!

Happy2bNappy · June 2014

DS was premature 32 weeks, he was 2lbs 14oz at birth. He suffers from moderate to severe hearing loss or moderate to profound (depending on who you speak to :-)) Like you I was devastated when I first got the diagnosis and for a while I was in denial. Thank God for the people who reached out to me from both the county and the state because I did not have a clue. Stay close to your team from Early Intervention they proved to be very helpful and if they did not have the answers they pointed me in the right direction. My son did not get his hearing aids until a week after his first birthday mainly because I did not switch insurance when EI told me to, that's how great they were. From the get go EI provided a counselor because they are aware of the issues parents go through with a new diagnosis, she also worked with DS teaching him how to listen. After DS first birthday the counselor was replaced with a teacher who came to our home, she was moreso for DS than for me. He also was doing speech therapy twice per week.

Fast forward...DS is now 4 yrs old DH and I chose not to use ASL yet, his communication is not yet where it is supposed to be but it is fairly close. He goes to an elementary school with typical hearing students they have a DHH (deaf and hard of hearing) program. As per his last report and iep meeting, he is off the charts academically and his speech is coming along nicely.

I had the same fears that you had regarding being bullied etc. but bear this in mind, children can be bullied or picked on for various reasons not only because they have a disability. For example some children are picked on or bullied because they are smart.

DS just finished his first year of preschool and he is one social butterfly. The first time I went to an award ceremony at his school I was in awe. I remember thinking 'you are only in preschool you are not supposed to be popular kid yet" lol. I was walking him back to his classroom there were at least 10 kids from various grades saying hi to DS and they all knew him by name, there was one 5th grader who gave him a Thomas sticker (he loves Thomas the train), she told him she was looking for him yesterday to give it to him but she didn't see him. All my visits to the school has been the same, he is well known and liked by administration, faculty and his peers.

Enjoy your baby and don't worry about the things that we parents tend to worry about. He will be just fine. In years to come you may be thinking like I ended up doing "to think I was worried about this stuff"

I am sorry I am all over the place with this cause I am manning the phones at my friend's business for a few hours. I just want you to know your son will do fine just try to make him wear his hearing aids as much as possible when he first gets them. Eventually he will understand their benefits and will ask for them.

sheislisamarie · June 2014

lipglossandblack said:

I was just browsing Bump boards and came across this and wanted to give you my input. I was diagnosed with moderate degenerative hearing loss when I was 12 years old. At that point, the doctors basically told me, my hearing will progressively get worse until it is gone. They had no idea how long I would have hearing, etc. I was devastated at that point because all I could picture was how my grandparents' hearing aids looked and I was scared that I would never have a normal teenage life.

At 16, I was at the point where I needed the hearing aids. I'm 25 and still wear hearing aids, although my hearing is gone in the highest frequency they test for. I will probably need cochlear implants in the next 10-15 years. I can tell you that I never was teased or missed out on friendships/dating, etc because of my disability. In fact, it was the opposite. If someone found out I wore hearing aids, there was a lot of curiosity about it. I understand that my situation is not exactly what your son will have as he has started a lot younger than I did. But, if you are concerned about teasing, etc, you will be shocked at some of the hearing aid models available. You may want to look into something completely in the ear and hidden when he starts school.

In the end, you are doing the best thing you can right now. He is going to grow up without any speech issues because you are getting his hearing taken care of right now. I am extremely thankful that my son did not get any of my hearing issues, but it was determined to be genetic, so there is no telling if any of my future children may have the issue.

Best of luck!

This. I really needed this. Thank you for sharing your story here with me to understand what it's been like for you with hearing loss and wearing hearing aids. I'm so glad that the experience for you has been as smooth as it seems to have been, though I'm sure it wasn't the news you wanted to receive at 12-years-old.

You really made me feel a lot better about what the future could be like for Max at least in a social setting. We're working closely with the early intervention folks to get him squared away quickly in terms of speech development, so I hope that for him wearing hearing aids will be no more of a thing than if he were to wear glasses (which he might also have to wear thanks to DH's super crappy eyesight (:|). And yeah, we might look into those smaller styles of hearing aids later once his speech is on track. I think they said it was an option around 5 years of age.

Son has moderate hearing loss, struggling with diagnosis

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