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Desperate parents needing the truth

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Hello all. This is our story…

Our son was born 6 weeks premature. Mommy has type 2 diabetes. Son was on cpap for a day and had a rough start but came through it all healthy. He is now 2 1/2 years old.

He failed his initial hearing test in his right ear. I believe he was 5 or 6 days old. The audiologist suggested a retest at 5 months old. We did that and they did a brainwave test and the ear plug test. (sorry I do not have his paperwork in front of me so I do not know the true names of tests).

His audiologist typed in the report that hearing was normal in the left ear and that the right ear was unable to test due to artifact. However, at the end of her report she typed that his hearing was normal in both ears and we were told that he passed. We were so happy that we did not question things we know nothing about.

Fast forward 2 years…

My sons speech was not developing like our other 4 childrens did so we enrolled him into speech therapy. After 6 visits with absolutely no progress the therapist recommended another hearing test.

We went back to the same nationally known Children’s Hospital that he was tested at both times previously.

This Audiologist did some testing and said that he had a profound hearing loss in his right ear. She recommended more testing be done and scheduled us another appointment.

At this next appointment we had two different Audiologist’s. They did more testing and confirmed the profound hearing loss. They also informed us that they looked at my sons previous tests and realized that when my son was tested at 5 months that he obviously failed and the Audiologist should not have passed him. I asked one of the Dr’s if it was obvious that he failed or if the previous Dr could have just read the test wrong. She stated that it was blatently obvious that he failed.

That same day we received a phone call from the Program Director of Audiology. She apologized to us for the “mishap” and stated that it shouldn’t have happened. We also learned that the Audiologist is no longer doing testing on that floor.

My son received a hearing aid a couple of weeks ago and today we went for another tests. I began asking questions about what kind of long term damage has my son suffered because of this misdiagnosis. The Doctor informed us that our sons development was greatly affected. Not only his speech. He did not walk until he was 19 months old and then not very well. I got very upset and the Doctor asked us to speak to the Program Director. We did. I asked her the same questions I had the other Doctors. This time I felt like I was being spun. She said that she did not feel my son would suffer long term effects. I asked her how obvious the brain wave test was that he failed. The Program Director stated that she looked at the test and that there was not much difference in the waves between his left and right ears. This stunned me because two other Audiologist said it was very obvious.

I had done some internet research and read that if the Auditory nerve goes unstimulated it begins to deteriorate. I asked the Program Director about this and she said that it would take more than a couple of years to do any damage to his hearing. I must have asked her 50 different questions and I feel like I got no direct answers. Very frustrated!!! :mad:

Today I scheduled an appointment with an at a private practice. Hopefully I will get the unbiased truth. But the appt is 3 weeks away. I want answers now!

Anyone that can shed some light on this is very much appreciated. I would like to know about the deterioration. Could his hearing have gotten worse in the last 2 years without the hearing aid? I asked for another brain wave test to compare the results to his one at 5 months and was spun on that also.

Please Help!

8 people in this conversation12 min readJump to latest

it’s time to lawyer up… find an that has no association with that hosp or you will continue to be spun around and around. I even suspect that new Doc who said it was obvious may now have a different tune.

Sorry for your sad and upsetting dilemma. One suggestion I would make is that you not go into your dissatisfaction with the previous doctors. To do so might cause the new doctor to couch his appraisal. It can also cause the new doctor to fear becoming involved in litigation. If I might suggest, just go into the appointment very upbeat, find out what can be done going forward. Try to get the new doctor to document any findings. Hopefully, then you will have documentation to present should you decide to seek a legal resolution.

In reply to @Mick_Shu

@Mick_Shu said:

it’s time to lawyer up… find an ENT that has no association with that hosp or you will continue to be spun around and around. I even suspect that new Doc who said it was obvious may now have a different tune.

Well, I think “lawyering up” is a bit extreme. People make mistakes…unfortunately it seems that the audiologists you are dealing with are all on different pages…but I don’t think getting a lawyer will benefit anyone. Ultimately hashing out who missed what and what they are doing now regarding interpretations of those results won’t really help anyone. Basically someone missed it. Who knows why you keep getting different information now…I’d focus on the results they just gave you and what you need to do now to maximize your’s son’s benefit of the hearing aid. I would speculate that your son had the profound hearing loss when he was initially tested which is why all they got was artifact during the test while the other ear was normal. The auditory deprivation you are alluding to is really more about adult onset hearing loss. It’s possible that your son’s hearing was better at birth, but any decline in hearing I’d suspect to be more from progression of whatever caused the hearing loss in the first place than from not diagnosing the hearing loss correctly when he was initially tested. With him being premature and having the “artifact” on initial testing he definitely should have been followed more closely…but hind-sight is 20/20. Can’t go back and change the past so the best thing to do is focus on what to do now. There are still many children that fall through the cracks especially when it comes to unilateral hearing loss.

As for future “long term damage” I would say that your sons possibilities of having significant, long-term effects on the auditory system/brain are low. Speech/language development is probably delayed but now that he’s gotten a hearing aid, those can be worked on and will most likely resolve with therapy. I would say that the hearing loss in the one ear wouldn’t have any effect on his walking or other physical/mental development aside from potentially being a little shy or introverted socially.

This is a great site and if you type in “Unilateral hearing loss in children” into a search engine you will come up with a ton of information and lots of parents groups. Most state that there are educational impacts that will need to be addressed, pretty much throughout his educational time in the school system, but even though you didn’t get a correct diagnosis until now, he is still very young and has an extremely plastic brain and auditory system that is still forming/growing and will adapt. Unfortunately, there are still a lot of kids that go undiagnosed until they hit school age, so even older than he is now…most of the ones I have seen once they have a diagnosis and are receiving treatment (i.e. hearing aids if appropriate) excel in leaps and bounds.

Even though you didn’t get a diagnosis until now you did catch it pretty early so you are definitely on the right path…

You all of you for your responses. Very informative. Especially you DocAudio.

The hardest thing right now is trying to get him to wear the . I have read that he is in the worst age group for this. I think it would have became a part of him if he had worn it from age 6 months. :frowning:

It would have been easier at that time for us also. I was a stay at home dad for the 1st year of his life. He was the only child we had that did not go to school and I would have been able to spend more time with him. He now has two younger brothers. One is also 2 1/2 and we have a 18 month old. We adopted the 2 1/2 year old about a year ago. With all the school activities our two 8 year olds are involved in and doctor appointments for the little ones we don’t have as much free time to make sure he is wearing it all the time. Usually his youngest brother is using it as a teething toy. Lol… We are both employed full time to support the family and taking time off is not an aption. When I get home she is off to work.

We have been in contact with a Law Firm already. They have requested all of his records and say that we have a case for neglect and possible malpractice for the misdiagnosis. However, they are holding off for a while to see how his next several appointments go. I know that this will not solve anything with my sons hearing but in the end my son has suffered by not being able to hear in that ear for the past two years. His personality is different than it would have been… Lots of things are different… My wife and I have not decided as of yet if we want to proceed with a lawsuit. The thing that is holding me back is not knowing if this has afeected my sons life forever and to what extent. If my son has lost more hearing because of it then, yes, we will proceed. I just wanted some honest opinions.

We have had some extra expenses because of this. We have speech once a week. Which is quite a task to orchestrate with the little ones. There are some therapist willing to come to our house but we cannot afford that at this time. We live an hour and a half from the Audiologist. It all adds up. We had more money and free time when this should have been caught. We are now stretched financially and mentally to our breaking points. I want my son to have the best HA and treatment that he can get.

We are at a loss I guess. Anger, frustration and some guilt for not catching it ourselves. I am the father and this is my baby. He is the only one interested in hanging out in the garage with me. He likes my tools more than I do. He is my best friend. Brings me up when I am down. But I can’t take this away for him. Instead I have to hold him down and force something into his ear while he is screaming at me to stop. Ugh…

As a parent, my heart goes out to you completely.

He is at a difficult age for introducing new rituals. But being consistent is the key. At this age, its a struggle to get them to wear the aid because it is different, probably scary and they are developing independence and their (usually loud) way of asserting that independence :wink:

The problem is compounded by the fact that his loss is unilateral. When the loss is in both ears, children have an easier time of associating the hearing aid with sound. Wearing aids = hearing things. When only one ear has the loss, they are hearing things, but not what they should. So making that association is going to be more difficult and not as apparent for him.

I agree wholeheartedly with DocAudio. I would also suggest finding a support group in your area. It can be invaluable for the both of you. Educational and supportive for you - and he gets to see other kids with hearing aids and may become more inclined to explore wearing his.

Good luck with everything!

dr.amy

Are you in the US? Your son should be qualified for a lot of special needs programs which could help with speech therapy, as well as PT and OT if indicated for his other sequelae of prematurity. In Pennsylvania he would be able to get medical assistance as a back-up insurance to cover things your primary doesn’t. There should be help with hearing aids as well. It might also be worthwhile applying for SSI. That might compensate a little for lost time at work. You will have to learn to be a pain in the rear end to make sure he gets the therapies and services to which he is entitled. Good luck and just keep putting the hearing aid back on him.

I too would look forward and not back. There are many kids who don’t get diagnosed until they are school aged. What you need to do now is work with a good pediatric audiologist who can fine tune the hearing aid. He won’t be able to give good feedback any time soon so they need to be experienced at working with someone so young.

You should definitely be getting free services. Look into the infants and toddler program for speech therapy. My son has a bilateral moderately severe to severe cookie bite loss and was diagnosed at 16 months. He started speech therapy right away and when he turned three was able to begin attending a deaf and hard of hearing (DHoH) preschool program in a regular elementary school. By kindergarten he was half day DHoH and half day regular school. In first grade he only had two hours/day in DHoH and by second grade was fully mainstreamed.

Your schools may not have a dedicated DHoH program but there should be speech therapy available. When he is older he will qualify for an for special Ed that they will be required by law to follow. This will put accommodations in place to help with his hearing loss in school.

Good luck and keep insisting on the hearing aid. Pour in language and he’ll be caught up sooner than you think.

Maureen

In reply to @proud_parents

I am 35 years old, and have profound hearing loss in one ear. I can tell you that I have “always” been hard of hearing in that ear, from having a pretty severe ear infection as an infant. I never had a hearing aid until about 4 months ago - because I compensated. I learned (subconsciously) to compensate by the good ear becoming VERY good. From your initial description, your son only has loss in one ear, as I do. I can’t speak to his developmental delays, as I am not a physician, but I can say that the human body is amazing, and learns to compensate for a lot of things, even (especially?) at your son’s age. I learned growing up to sit near the front, to sit near the right side of the room (my loss is in my right ear, so that meant all of the class room was on the side that I could hear from). So my point is that yes, someone screwed up and missed the hearing loss, and yes, your son could probably have benefited from earlier intervention, but you can’t change the past. Get him whatever help you can get him now, and know that you are doing the absolute best that you can for him. Make sure his teachers know as he grows up that he needs to be on the right hand (or left hand) side of the classroom so his good ear faces the classroom. Give him the love that you already are, and he’ll do just fine. I know - I did.

been there as an infant, found out that they noticed I had a bilateral mild/moderate loss but for now, I have a moderate-severe sloping into severe and happy with my Safari 600s.

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