Failed Hearing Test 3 Times - anyone else?

nienot · September 2014

Hi all, I've been very absent lately due to a baby that came 3 weeks early - a bilirubin level of 23 that took a while to come down after a stay in the NICU, and all of that coincided with us moving on the day we were released from the hospital. Kind of a perfect storm!

Anyhow, we were team green and welcomed a relatively healthy baby boy on September 5th at 37 weeks. He was 7 lbs 6 oz. We were originally going to have him at our birthing center, but were transferred out last minute because of preeclampsia.

At birth, he wasn't breathing and didn't have a steady pulse. His apgar score was a 3. Eventually they upgraded him to a 7 at his 5 minute apgar test.

Anyhow, the big question I have is about the newborn hearing screen. He failed the test 3 times while in the hospital. He was 6 days old the last time he failed it.

Because of this, we have been referred to a newborn audiology specialist and have our appointment in a week or so. We have had case workers from the state of Texas contact us about it and say they will follow up until he is 36 months.

Has anyone else gone through this? How did it end up? I definitely think there is something weird going on with his hearing. He doesn't respond to voices at all. Do any of your newborns respond to voices? He also doesn't respond to loud noises except in rare occasion. We can be clapping right next to him and he doesn't flinch. He does flinch occasionally at loud noises, like a door slamming really loud or a pan being dropped. But not much else. And we also kind of wonder if those responses are because of vibrations, not sound.

Anyhow, would love some former experiences or even if you have a baby who passed, I'd love to hear what sort of auditory stimuli they respond to.

Hoping our sweet boy can hear, but I know it's not the end of the world if he can't.

Thank you in advance.

rlyttle · September 2014

No advice, but just wanted to give ((hugs)). Our LO seems to respond to voices and noises as a newborn. Hang in there Momma. Hopefully it's just fluid in his ears or something that can be fixed. Xoxo

saraeric · September 2014

We are going through that too. Failed 3 times. We have an appointment with the audiologist on October 13. DS does respond to our dog barking and blinks when I snap in his ears (b/c I'm a nice mom like that

). I had a really, really tough time when he failed the third time but I've decided that if he does have hearing loss it is best that we're catching it early so we can do everything we can to get him help.

nienot · September 2014

Thank you @rlyttle‌. I appreciate the feedback.

@saraeric so sorry you are going through this too

I hope your appt goes well, and I'll be anxious to hear about it. We also do lots of little sound tests. The most concerning is that the clapping around his head does nothing for him. I agree with you that I'm just glad we'll catch it early if there is something to be concerned about. It's funny, because I sort of half joked that I thought the baby might be deaf from about 6 months on because no matter what I tried, he wouldn't respond to music or sound in utero, and all of those websites were telling me that baby should be responding to music, etc. So, I kept telling people I thought something was wrong with his hearing. If something does end up being wrong, I'm going to chalk that one up to mother's intuition

sheluvs2travel · September 2014

No advice, but sending thoughts and prayers your way. Good luck at your appt. next week.

nienot · September 2014

Thank you thank you @cpj7 and @smileygirl18. I sincerely appreciate the kind words. The waiting is the hardest part, but we are just lucky this is the only thing we are worried about. Thanks again ❤️

ZephinaRose · September 2014

Sending love and thoughts and prayers your way hun. No advice here especially since my LO is only 3 weeks today. I wish you all the best and hope to hear good news about your LO's hearing soon!

Pancake227 · September 2014

Babies can tend to fail due to fluid in their ear canal. Give it some time and see what the audiology tests reveal. Like you said if he does have a hearing loss it is not the end of the world. It is better to find out now then years down the road. I teach deaf and hard of hearing children. If you have any questions or concerns please PM me. I've also reached out to saraeric.

nienot · September 2014

@ZephinaRose‌ thank you so much!

@Pancake227‌ thank you! That is reassuring to hear. Quick question that you may or may not know the answer to. When we were in the NICU they mentioned that the very high bilirubin count he had could cause brain damage and hearing loss. His count on we 23 at the highest when he was 4 days old. I think it took us 2.5 days to get it down to 13 of 24/7 lights. Do you know it the hearing loss associated with high bilirubin counts would be considered permanent or is it something that can be helped with an implant or surgery? No worries if you don't know. Just thought I'd check. Thank you again!

pshaortao · September 2014

No advice here as a parent, but as a deaf person. I was born deaf (Connexin 30 Gene). Back then, they didn't do newborn hearing test. My parents didn't figure it out until I was about 10 months old when my father went behind me and banged some pots, and I didn't even flinch. My mother was heartbroken when doctors told her and my father that my hearing loss was so severe I would never learn to speak. Well, screw them because they've been proven wrong

It was a lot of work and dedication to get to where I am now, but I wouldn't change anything!

Also, I saw that you mentioned Texas, and I wanted to point out that Texas is probably one of the best states for a deaf person to grow up in because they provide a lot of resources (including covering tuition for specific colleges!). Whatever happen, it will be just fine as long you are the best advocate for your LO. My parents were and I'm forever grateful to them. If you ever wish to know more about my experience, you're welcome to PM me anytime!

str13 · September 2014

@wpatx I'm so sorry you're having to go through this!! Big hugs!!
my LO also failed her hearing test three times on her left side. Like PP said, it could just be fluid and she may pass. We've been referred to an ENT/audiologist for testing like you on Oct 3. It is scary, but if we find out early then we could start working with our babies now!!

@saraeric

I'm a good mom like that too!! Hehe!! Lots of clapping. Sometimes when I call for DH I watch her face to see if she flinches or her face changes. It doesn't though.

Marchie1214 · September 2014

No advice but sending some T&P and hugs your way!

Groxb · September 2014

@pshaortao‌ - awesome post

My LO has microtia, which is the fancy term for an underdeveloped right ear. We are not sure if she has a canal inside that ear and/or how it will effect her hearing. We will learn more when she's 3 months.

You're in my thoughts, @wpatx‌!

ksinclair · September 2014

When my daughter was born she failed her screening too. It is a lot to take in and a lot to learn about. We were referred to an ENT and had horrible experience with them. They didn't know what they were doing so we ended up going to 3 different places to have her tested. It isn't an easy process but really important to understand there hearing levels. It turns out she does have a mild to moderate hearing loss in both ears. We are not sure if this was caused by something during birth or hereditary. My husband has a hearing loss too. He had hearing aids when he was little and hated them. They have gotten better but after our experience with seeing how our daughter responds to noises we decided to wait on the hearing aids. We met monthly with a speech therapist that came to our home. This was a great reassurance as she got older that she was right on track with her age group. She is now 2 years and 4 months old and hears better than my husband. She speaks well and surprises me every day. My advice to you is to do your research and talk to other parents with similar experiences. The doctors really pushed us to get hearing aids but we really felt that they didn't know our child. So i recommend a speech therapist that actually gets to know your child. Things could change for us at any point. She could need them once she starts school. But for now we are happy with our decision.

Pancake227 · September 2014

My only experience with high bilirubin is from a student in my school. I'm not a doctor and don't want to pretend that I could answer that question with absolute conviction. The particular student in my school has a permanent hearing loss. He has a cochlear implant. Don't jump the gun. See the audiologist first and go from there.

wpatx said:
@ZephinaRose‌ thank you so much!

@Pancake227‌ thank you! That is reassuring to hear. Quick question that you may or may not know the answer to. When we were in the NICU they mentioned that the very high bilirubin count he had could cause brain damage and hearing loss. His count on we 23 at the highest when he was 4 days old. I think it took us 2.5 days to get it down to 13 of 24/7 lights. Do you know it the hearing loss associated with high bilirubin counts would be considered permanent or is it something that can be helped with an implant or surgery? No worries if you don't know. Just thought I'd check. Thank you again!

nienot · September 2014

@pshaortao‌ thank you so much for such a great post. Hearing your story really makes me feel better and it's so good to know that Texas is a good place to be for this if anything is wrong.

Thank you everyone for the kind words. We will be sure to let you know how it goes.

@str13‌ best of luck to you and your LO. Our appt is October 3rd as well. We will be thinking of you!

str13 · September 2014

@wpatx we'll be thinking of you too!!

not too long!! Waiting for her appt has been killing me!! Let us know how LOs appt goes! FX!!

jg1011 · September 2014

No experience just want to offer mt prayers and good wishes to all of you waiting on results/tests.

peanutbuttervibes · September 2014

jg1011 said:
No experience just want to offer mt prayers and good wishes to all of you waiting on results/tests.

+1 you all are great moms and your LOs are lucky to have you!

mrsdanielleM2010 · September 2014

braybee said:

jg1011 said:
No experience just want to offer mt prayers and good wishes to all of you waiting on results/tests.
+1 you all are great moms and your LOs are lucky to have you!

Yup, this.

SingleMom31 · September 2014

Crossing our fingers for you. I hope they're able to give you some answers.

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