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6 Weeks Old - Fail ABR at Hospital, Pass OAE at Audiologist & Fail Both at UCLA House

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Hello everyone, we are new parents and our baby boy is officially 6 weeks old. We have sought the best possible medical care and are trying to digest everything to point us on the right track. Any input is appreciated if you have had any similar experiences.

Here are a list of events

Hospital - C-Section at 39 weeks due to breech baby. Failed ADR on day 2, 3, and 4. Told to come back and re-test in 3 weeks. He did not cooperate and was crying/fussing through all of them.

Retest - Came back to hospital and with same person, performed ADR with Fail/Refer. Filled out all necessary paperwork to proceed with additional testing.

Met with Pediatrician 1 week after retest - The paperwork for additional testing was sent to UCLA House and there would be another 2 week delay before their first available appointment.
The pediatrician recommended meeting with local audiologist.

Local Audiologist - Met the day after the pediatrician visit and tested only. Said everything is perfect and a 4/4 pass on both ears with all results printed and in hand. Also said, maybe check back in between 6-12 months but his hearing is perfect.

UCLA House (2 weeks after audiologist)- We were still seeing signs that he was responding to minimal sound and proceeded with our previously referred appointment with UCLA House. No fluid in ears and fail on OAE and . Profound loss in both ears was the consensus. They sent us next door to get approval on hearing aids and talk further with a surgeon about future cochlear implants.

Current - The UCLA appointment was today and we proceeded with the hearing aids as recommended. Based on what we have learned and where we are at now, we are going to proceed when he reaches 9 months with the cochlear implants if it is still recommended by UCLA and hearing does not seem to be improving.

Any recommendations on how you would proceed or if we should look for further testing since he passed the OAE at the local audiologist in the middle of all this.

Thanks if you took the time to read all of this.

6 people in this conversation6 min readJump to latest

So sorry that you and your baby son have to go through this. I’m not an expert and I don’t have any experience with neonatal or pediatric hearing loss, but I have worked in academic medical center patient care settings. For what it’s worth, my advice would be to stick with UCLA (or another university-based hospital/practice that is up on the latest treatment and research), and make sure that any audiologist you see specializes in pediatric cases. You might also check the American Academy of Audiology web site to search for qualified pediatric audiologists in your area.

Wishing you and your son the best care possible.

Thanks Rich. The UCLA program is specifically for children but we hadn’t thought about that specifically for a local audiologist. Merry Christmas.

@bill2, if you’re in the LA area, you might also check out USC/Keck Medical School, I think they have a center for childhood communication that offers pediatric audiology services. It might be through Children’s Hospital of LA, but I’m not sure. Good luck, keep the faith.

A blessed and Merry Christmas to you too.

Edited

Pediatrics — Hearing Health Foundation3

I believe this site is run by Starkey. I hope you can find information that will help. Our son was born with a Mild-Moderate hearing loss, we found Early Intervention programs were key for both our well being and our son.
He just turned 11 and has been wearing his ’s since the age of 2. Later just remember to let him have input on color of aids and molds, if it is something he got to choose he will more likely use without fuss.

I am bookmarking he site to read and learn. We chose his initial hearing aid to be flesh tone but it absolutely makes sense to let them chose their own color when he is a little further along. Anything that gives him the “want” to wear and embrace.

Thank you for the information.

I can see how that local test would muddy the waters for you, causing some extra uncertainy in an emotional time. In all likelihood the results from the pediatric audiologists at the UCLA House are correct, but I think they would be empathetic if you were to have the local audiologist send them their results and if you asked them to explain to you what might have happened. If you perceive anger or frustration in the UCLA audiologist, keep in mind that those emotions are not directed at YOU. Misidentification of a child, either as normal if they are not, or as having a hearing loss when they do not, is frustrating for a pediatric audiologist because they ARE sensitive to how difficult that can be for a family, and they just want the best for you and your child.

Testing infants is always more complex than testing adults, which is part of the reason they are tested and re-tested at this age when something looks abnormal.

The baby was perfectly cooperative with the UCLA staff and we believe their testing was the best and most accurate we received. We had given UCLA the report and results from the previous audiologist and the best they would say was that is was a fluke.

We have since also contacted the audiologist that gave a pass and they said their equipment/testing is more basic. They did not have an explanation.

The baby is getting his hearing aids on 12/20 and we are proceeding with UCLAs recommendations and plan of action. If we see any positive changes, we may retest the with UCLA or get a second opinion from USC or John Tracy.

We are in good spirits and and just want the best for the baby. Thanks for your insight and I appreciate your response.

You might also check out the Facebook page
“Parents of Children with Hearing Aids”
Have a blessed Holiday Season.

This is no doubt confusing and frustrating for you. You want a clear answer. And the fact that the child passed at the first audiologist would immediately make me suspect/want to rule out auditory neuropathy (AN). When you go in for retesting, ask them to repeat OAEs again–and not just an OAE screener, but a full diagnostic OAE battery. Cross check that with another full, diagnostic . Obviously follow their recommendations, but it doesn’t hurt to come to those appointments with some information of your own. Mention AN to them and ask their opinion. Don’t proceed with implants until you have those tests corroborated by a behavioral audiometric exam, which you should be able to obtain around 6 months. Good luck to you. Sounds like you’re in good hands, and there are plenty of options these days to manage childhood hearing loss.

I just wanted to say a thank you to everyone that responded and give a quick update to my original post.

William was implanted with cochlear implants at 7 months and activated at 8 months. Everything was done and is still being worked on through the UCLA/House system.

He just turned 17 months and and has blown away our expectations. We just did a sound booth test with our audiologist and he is about 2 months behind a normal hearing 17 month old.

We also took part in a news story to spread awareness and help educate parents that may be in a similar situation. This is the story from a few months ago.

Child born deaf receives gift of hearing after life-changing cochlear implant4

A mom was told to wait for a cochlear implant for her son who was born deaf, but she fought back to get the implant while the child is still young.

If anyone reading this now or in the future have any questions, feel free to message or post.

Thank You All.

@bill2 what a fantastic ending for you, your wife and your son. Good on you both for getting that vital second opinion. I love his Kanso’s… Good luck on his new hearing journey…

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