Monday, November 3, 2014

Raising a Child with Hearing Loss: Detection in Newborns


I am mother to a three-year-old who wears hearing aids.  It's not unusual for people to stop me when I'm running errands with my son and get asked, "What's he wearing in his ears?"  I'll explain he's wearing hearing aids and the next question we often get is, "Can't they fix that with surgery?"

Although I'm surprised that others aren't familiar with hearing aids on little ones, I really shouldn't be, because until I had my son, I wasn't aware that hearing aids were worn by anyone besides the elderly.  So I thought I'd start a series here on my blog and share with you the story of what it's been like these first three years, raising a child with mild moderate sensorineural hearing loss.


About this Series

I thought it might be fun to share my experience raising a child with hearing loss, but it's a long story, so I'm breaking it up into the following posts:
Part 1: Detection in Newborns - this post
Part 2: Getting Hearing Aids
Part 3: Support and Resources
Part 4: Developing Language and Communication
Part 5: Speech Therapy

Note: I am not an audiologist, speech therapist, or any sort of professional with training in hearing.  I am just a mother sharing my story of raising a child with hearing loss.  I am including references throughout my posts for those who wish to look up more information on hearing loss!

Hearing Loss with the Young 

Hearing loss is one of the most common birth defects in the US, affecting approximately 1-2% of all children.  With our first child, we considered amniocentesis or CVS for genetic testing purposes, but it never occurred to us to be concerned about hearing loss.  Most states are now required to conduct hearing tests on newborns, which is great -- early detection is key, but as I'll share with you -- I met some families where their hearing loss wasn't detected at birth, but much later, when speech deficiencies highlighted the issue.

Detecting Our Son's Hearing Loss

My son was born in California in 2011, where law requires that every newborn be given a hearing screen, and if necessary, a hearing test.  Every state has their own regulations regarding how/when infants and/or children must be screened for hearing.

  • Hearing screening: a screening is a quick test that is performed to determine if a more comprehensive test, a hearing test is needed.  Generally a hearing screening tests four frequencies at 25 dB.  If the subject does not pass the screening, then a hearing test is recommended.
  • Hearing testing: a hearing test examines all three parts of the ear: outer, middle, and inner ear.  There are different types of tests that are conducted in these three parts of the ear and together, these tests help an audiologist determine what type of hearing loss the individual has.

First screen: a day after my son was born, he was taken away for his hearing screening.  I won't go into the details of what testing was conducted at this first round, but the nurse brought my son back, said that he had failed the hearing screening, but not to worry -- they would test again in a week or two -- because sometimes fluid in the ears results in a negative screening.

Second screen: a week later, we went back for a second screening, and again, my son failed the screen.  At this point, they pediatrician said it would be best to set up a hearing test with an audiologist with pediatric specialty, so we were quickly signed up and asked to come back when my son was three weeks old for a more thorough hearing test.


Hearing Tests on Newborns

I'm going to share my experience of going through a hearing test with a newborn, but keep in mind that this is our experience in the state of California and at a specific hospital, so the testing could vary from state-to-state.

Because newborns can't communicate, tests that do not require an observable response in infants.  You can read more about these tests here.  What I will share with you is that in preparation for these tests, it's best that your child be asleep, so they asked that we do the following prior to the test:
  • Refrain from feeding our son for at least 90 minutes prior to the appointment
  • Make sure our son did not sleep at least 120 minutes prior to the appointment
As soon as we arrived and were checked in, the audiologist then asked us to feed our son and put him to sleep.  This is where things got tricky.  My son was not a very good napper at three weeks.  The audiologist explained that if our son's hearing loss was significant enough that he was experiencing loss at most frequencies, the test would go quickly (i.e. if he was deaf, the test would take five minutes at most).  But, if the hearing loss was at very few frequencies, the testing would take more time because she would have to test many, many frequencies to flush out which frequencies were problematic.

The good news was our son was not deaf.

The bad news was that because the hearing loss was at select frequencies, we ended up testing for close to 90 minutes.

Unfortunately, my son did not stay asleep for a consecutive 90 minutes.  He woke up after 20 minutes, we spent ten minutes getting him back to sleep, then we got another 10-15 minutes of testing completed, and ran out of time and had to reschedule another round of testing.  We returned a week later to finish the remainder of the frequencies we didn't get to at the first appointment.

At the next post, I'll share what came next: the hearing test results and the next steps.

Do you know anyone with hearing loss, young or old?  Do you know anyone who is deaf?

11 comments:

  1. I am glad you had early detection test, it sounds like a lot to test. Will his hearing change or is that an unknown? I have friend who has deaf parents, although she was and her bother were fine, both had children that were affected. her daughter has minimal speech issues though. How's your little guy doing with speech?

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    1. Early detection is key because loss of hearing or complete deafness obviously can hamper a child's ability to develop speech (which is why it is federally required to test all newborns these days).

      Because we were able to quantify his hearing loss accurately by the time he was a month old, through federal and state programs we have taken advantage of services that have helped us with developing our son's communication skills, including speech. My son is now close to three-and-a-half and we see a speech pathologist once a week.

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    2. That's awesome :) I worked at an elementary school (office) for years and loved seeing the little ones come in for their time with our speech therapist. She serviced some toddlers at home and some at school, but it was always amazing to see how much progress they could make in a few years!

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    3. How great that you are blogging such good information for new moms! I am going to share this on Facebook, my kids are older, but I have a lot of friends having children! Great series!

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    4. Sandra, I'm glad you will be sharing this post on Facebook, please do. Awareness is key!

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  2. It's great that they detected this so early! My grandmother in law has some hearing problems, but other than that I don't have anyone in my 'close circle' that has it. I had never really given it much thought, either during my pregnancy. It's so interesting to read about your experiences in California, and thank you so much for sharing your story :)

    Here, they did what seems like a hearing screening (they called it test in Dutch), but came to our house to do it when our son was about a week old. The test seems like it was a lot of work - oi, getting a newborn to sleep to conduct it. Actually, do you know why do they have to be asleep for it?

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    1. Great question on why the baby needs to be asleep for testing. The two types of tests ABR and OAE require that no other noises be present than the noises emitted from the instruments used for testing. If the baby is awake s/he may make noise(s) that could interfere with the feedback the audiologist is collecting, resulting in a false positive.

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    2. I should also add that we have no known history of hearing issues on either my side of the family or my husband's side of the family. It is common, with my son's type of hearing loss (sensorineural) that there is no known cause for the hearing loss.

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  3. Wow I'm sorry you guys and your son had to go through that. Super good they detected it early though and you guys have programs to help out

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    1. You know, my mother was more freaked out about the hearing loss than I was. I started wearing glasses at the age of seven and have severe myopia, and I think of the mild-moderate hearing loss my son has as something similar to my impaired eyesight. I think that has helped me keep a balanced few of his hearing "handicap".

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  4. Wow, I had no idea that hearing loss was one of the most common birth defects in the US. My dad has had substantial hearing loss and needs hearing aids. One of the biggest frustrations for him is conversations in crowded areas. The background noise is one of his biggest struggles in participating in social events. http://metrohearing.com/hearing-aid-center-phoenix/

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