Hearing loss

[triples15]

Hello again everyone,
Our daughter failed the newborn hearing screening and we have been seen twice for more extensive testing. Yesterday they finally sedated her in order to be able to complete the test. Even with sedation she still woke up after only an hour, just as they were finishing the test! But that's a whole different story.
Sadly, the results show she has moderate to severe hearing loss in both ears. We will go back in a about a month where they will repeat the same test to confirm their findings. We feel sure she responds to soft sounds but were basically told we were in denial, and that she probably feels vibration or sees us out of the corner of her eye, rather than hearing us.
After the appoinment they sent us immediately to see an ENT specialist. He said after the finding are confirmed they will do testing to try to determine the cause. The vast majority of hearing loss is genetic/hereditary or caused by problems during labor delivery/prematurity. Neither my husband or I know of anyone in our families with hearing loss and her delivery was totally normal (she was term and a vaginal delivery). He did however seem particulary interested in the meds I took during pregnancy and meticulously wrote them all down. Ugh. I know it's VERY unlikely the meds caused this and that I didn't do anything wrong during pregnancy, but it's very hard not to feel terrible and question everything at this point. I hope eventually we are able to determine the cause.
So the plan of action will be to retest in one month and if the same results are found, fit her for hearing aids. Then pursue the genetic test as well as a CT scan to try to find the cause. Ugh. My poor baby girl. I talk to her CONSTANTLY and it is such a blow to find out she most likely doesn't even hear me.
Anyway, I guess I'm mostly just venting. But also wanted to put it out there to see if anyone else has had a similar situation.
Thanks a bunch for "listening"!
Autumn
PS. Just realized I never said her age, she is 4 months old. They told us that if they catch hearing loss by 6 months and get hearing aids, children have a very good chance of developing normal speech. I hope and pray this will be the case for her.

 

[kitomd21]

I will be praying for you and your little girl. Keep us updated!

 

[missT]

Can I ask what meds you took during your pregnancy?
May God give you and your little girl strength. I cant imagine what you must be feeling. sending healing vibes.

 

[Keepercjr]

I'm so sorry Autumn. But the bright side is that they caught it early and she has a great future, hearing loss or not. I took several sign language classes in college (and even a deaf culture class) and I can tell you that people with hearing loss lead wonderful fulfilling lives. And many communities have "deaf communities" within and they are a great source of support and encouragement to eachother. I always told myself that I was so glad I got to dip my toe into the deaf community via my classes and that should I have a deaf child that at least I knew it wouldn't be the end of the world.

You will get through this.... HUGS!!

 

[triples15]

Thank you so much for your kind words everybody! I really really appreciate it. I will definitely keep you posted as to what happens next. Caroline, thanks, that is what I keep telling myself! She will still lead a fulfilling life whether it turns out to be moderate to severe loss, or even if she is completely deaf. I know things could be MUCH worse, but I've decided to let myself wallow in this for a day or two and then I will move on. Regardless, we definitely plan on taking this head-on and doing whatever possible to help her. They will be sending someone from the Department of Health and Human Services out to work with her, as well as to teach me ways of working with her. I feel fortunate to live somewhere where these services are available to us! On another note, I also *tried* to take a sign language class in college! I say tried because I ended up dropping it after a week or two because I just could NOT catch on! My brain just didn't pick it up. And not to brag but I'm a fairly intelligent person, and graduated college (bachelors) with a 3.9 GPA. Something about sign language just didn't click! It's scary now to think I will most likely need to learn it. Yikes! I won't have any choice but to figure it out this time! That's so cool you had a positive experience with it. I really hope it will be the same for me this time. missT, yes you can ask! My meds were: Pulmozyme Albuterol Hypertonic Saline (7%) Mucomyst Serevent QVar Prevacid Prenatal Vitamins They had me stop Mucomyst for the first trimester. I had also been taking Zithromax prior to pregnancy but that was stopped altogether and I have not restarted. I also did 2 rounds of Cayston during pregnancy, both after the first trimester. I am currently breastfeeding and all my meds have remained the same. Of course when searching my brain for a reason for her hearing loss I can't help but wonder if there is even the tiniest possibility something CF related has caused this. I think that is why I want to pursue the genetic test to try to find the cause, although we were told it is very pricey and insurance companies will not usually cover it. I feel it may be worth it for my peace of mind. We will see. Well I better run. Thanks again everybody! Autumn

 

[LouLou]

Hi Autumn, I hope you find answers that give you some relief. I personally have great hope for her ability to hear and speak with the help of the hearing aids and speech therapy. Do keep speaking to her - who knows what she actually hears and how accurate these tests really are. Plus she's learning to read your lips a lifelong skill should she be hearing impaired. Hugs!

 

[Beccamom]

I am so sorry to hear what you are going through. I do not have CF and it is my 12 year old still in limbo for a CF diagnosis, but I have a child who is now 10 yeras old no-CF who had moderate to severe hearing loss as a baby. I would recommend asking your pediatrician about Early Intervention.

I live in New Jersey and each state is different, but my daughter received home based therapy from a teacher of the deaf and hard of hearing. She was a blessing to my family. She not only taught us how to help our baby learn, but also about hearing loss, understanding the hearing tests, etc. In our case she came to our home. She was the support system I really needed at that time. Best wishes.

 

[triples15]

Lauren, thanks a bunch! I am very hopeful too. I will most definitely keep speaking to her! I completely agree about not being sure what she actually hears and the accuracy of the test. I'm glad they will be repeating the test before officially moving forward with hearing aids etc. In fact, one reason I slightly question the test is that throughout the test (which took about an hour) the little ear pieces kept falling out of her ears. This probably happened a total of 5-6 times. On a couple occasions the audiologist did not even see that they had fallen out and I had to tell her! Of course she can't hear if they are not in her ears all the way or have completely fallen out! They also changed the size of the tip twice because they weren't fitting into her ear correctly. I don't know if I'm in denial and searching for reasons for this to be wrong or if that actually could skew the results. Only time will tell I suppose.

Becca's mom, thanks! I think you're talking about the same thing I mentioned in my second post. Someone from the department of Health and Human Services Early Development Network will start coming out to work with us after her next hearing test, when the hearing loss is confirmed. I hope she/he will be as helpful as your worker! I could definitely use the education/support right now as this is a whole new ball game for me and I don't really understand much of it at this point.

I know each case is different but can I ask how your daughter is doing? Did she use hearing aids as a baby and if so would you mind telling me a little bit about how it went and how her development went?

Thanks again everyone! I really appreciate it!

 

[Melissa75]

(((HUGS))) I'm sorry you're daughter might have hearing loss, but as many have said, it is great that you may have caught it early. You also sound like a really positive and proactive person and those are wonderful traits for your daughter to have in a mommy

My husband's best friend --they met at work almost 20 yrs ago-- has moderate-to-severe hearing loss from an infection in childhood and has worn hearing aids most of his life. He's a wonderful guy, has a fantastic career and from what I've heard was quite the social party guy in college.

Your med list sounds pretty tame, and even if the cause ends up pointing to meds, you have can't blame yourself. Your daughter is here because you stayed alive during your pregnancy. In the end, we pass on genes for looks, brains and everything else good and bad, we take meds that put them at risk for x, y, or z; but I think it is safe to say we've all done our best.

 

[LouLou]

I took Isaac to get his hearing tested when he was just shy of two. There were no ear pieces. He sat in a box similar to our pft box and the audiologist could speak to him from outside the box. Now that I think about it he may have had headphones on...don't recall but I think the sounds were just over the intercom in the box. He had to drop a block in to a cube each time he heard a sound. They also used a device to test wave motion in the inner ear to see if there was structural damage. All came out normal. I did this to ease any concerns I had or would have about loss due to Tobi use by me during pregnancy.

 

[Beccamom]

I don't know if you got my PM I tried to send it from my cell phone.

My 10 year old is doing well as she uses a personal FM system in school, but no hearing aides.

There are many types of hearing tests and I would recommend familiarizing yourself with them. I would ask for an ABR test with reverse polarity very quickly becaues in a very young baby this can be done by the better hospitals while the child is awake, but after a certain age usually 4 to 6 months the child would have to be sedated. This tests for a specific type of hearing loss called Auditory Neuropathy.


As for sign language do not worry about that. If your child is found to have a hearing loss, then you as the parent decide the child's means of communication. Each teacher of the deaf and hard of hearing is skilled in a particular way of teacher such as sign language, total communication, signed exact english, and Auditory Oral approaches such as those that used Cued Speech.

We chose total communication (sign and oral language) and Cued Speech was the answer for us. My daughter learned to talk.

As for her progress she had no words until 2 1/2 and now at 10 she tests age appropriate on tests of expressive and receptive language, although her functional listening ability without lip reading is at 55% without her Fm system. She is an excellent lip reader and performs at an exceptional straight A level at school.

As a parent you have many options and children with hearing loss at any level can lead "normal" productive lives. In the deaf community they don't consider being deaf a disability. I always tried to keep that in mind when we hit a rough patch or a time with slower progress.

Best wishes,
Jen

 

[triples15]

Thanks Melissa your words helped a lot! I really appreciate it. Lauren, yes I always worry about Tobra. I don't neb Tobi due to bronchospasms but still use IV Tobra for exacerbations. Luckily I didn't need IVs while pregnant so we didn't have to make any tough decisions regarding whether or not to use it. I'm really glad Isaac's tests came out normal! I replied to Jen's (beccamom) PM but for clarification in case anyone else was wondering.... Maya failed 2 newborn hearing screenings which is an OEM test. Then they sent her for an ABR test which is a more diagnostic test that measures brain waves. This is the test that showed moderate to severe hearing loss. At this point it is all but certain she has hearing loss, however, they would still like to be sure they can duplicate their findings on a subsequent ABR test.

 

[triples15]

<div class="FTQUOTE">Originally posted by: Beccamom There are many types of hearing tests and I would recommend familiarizing yourself with them. I would ask for an ABR test with reverse polarity very quickly becaues in a very young baby this can be done by the better hospitals while the child is awake, but after a certain age usually 4 to 6 months the child would have to be sedated. This tests for a specific type of hearing loss called Auditory Neuropathy.<div class="FTQUOTE">


We are supposedly at one of the best hospitals in the country with regards to hearing loss. Boys Town National Research Hospital in Omaha, Nebraska. At age 3 months they attempted the ABR with no sedation and were unsuccessful. They tried for over 2 hours. I was really hoping to not have to sedate her but we were left with no choice and had to schedele the sedated ABR. The sedation is an oral med, Chloral hydrate, that tastes awful. It was quite a bit of medicine and they had to hold her down to finish giving it to her. She choked on it as they were holding her down because she was hysterical, then, throughout the test she had a productive cough (which she has NEVER had) so I'm worried that some of the med went into her lungs. Needless to say, I'm not looking forward to having this done again in a couple of weeks.