I turn 30 in one week, and I'm dedicating this one to the St. Joseph Institute for the Deaf.
Max has been receiving speech therapy services from St. Joe for more than a year now, and there's no doubt that his weekly sessions are helping him learn to talk.
One of the first questions that usually comes up about Max's hearing aids is how we discovered his hearing loss. The official diagnosis took a few months, but the delay allowed Travis and I time to process the complete shock on the day Max was born.
Thankfully, newborn hearing screenings have been mandated in Indiana since 2000. Because it's just one of dozens of tests that newborns go through in the hospital (when everything is a blur anyway), a lot of parents don't give it much thought unless their child fails.
When Max failed his first hearing test in the hospital, no one seemed too concerned. When he failed a second time, we were told it was probably fluid in his ears since he was delivered early due to my preeclampsia. I can't recall how many more times they attempted the test during our stay at the hospital, but we were sent home with a referral for diagnostic evaluation.
Something that still bothers me to this day: When we received our referral, we were told that many parents actually end up skipping the follow-up testing because it's so expensive and it's usually just fluid in the ears that clears up.
Both those points may be true, but shouldn’t be a factor in pursuing more evaluations. More than 70 percent of newborns who fail their screening in the hospital are ultimately identified with normal hearing in Indiana. And the testing IS expensive. When we booked Max for follow-up testing with an audiologist, we were required to sign a waiver to acknowledge that we would likely be responsible for $1,500+ because so few insurance carriers cover the necessary testing.
It took us a few months to get scheduled for follow-up testing, which meant we spent a lot of time wondering whether those tests in the hospital were wrong. Max would startle easily when the dogs barked and seemed to follow our voices, so we almost considered blowing off the testing ourselves. Max literally woke up to the sound of Travis fluffing his pillow on from the other side of the house, but then he slept right through the ear-shattering alarm that we accidentally set off at my parent’s house. Even Max’s *former* pediatrician clapped her hands loudly and said “see, he can hear just fine” when he responded. We weren’t sure what to think, but soon discovered stats that that showed that without early intervention, kids with mild-moderate hearing loss will fall one to four grade levels behind their peers. The cost and hassle of testing suddenly seemed so small.
Preparing for Max’s hearing test felt harder than any exam in school. Because they can’t really raise their right hand when they hear a beep in their right ear, infant hearing is tested using auditory brainstem response. Clicking sounds of various frequencies are sent through little baby earphones, and electrodes placed on the head (like the one in the picture) measure whether the brain is responding to the clicking. The kicker? ABR tests take 1-2 hours and can only be completed during a deep sleep. A newborn’s sleep schedule isn’t exactly predictable, so we were given a long list of instructions to make sure the test could be completed without sedation: Wake Max up early on test day, keep him busy all morning, don’t let him eat for 2-3 hours before the appointment, make sure someone rides in the back of the car with him on the way to the hospital to keep him awake. Somehow we managed to make it to the hospital and through the registration process with an infant who hadn’t eaten or slept for several hours.
The testing room at the hospital is tiny, so only one of us was able to sit through the test with Max. I selflessly volunteered to snuggle my boy for 2 hours.
The nice thing about ABR testing is that the results are immediate. After the test, the audiologist invited Travis back into the room and told us what she had found: Max has mild-moderate hearing loss in both ears. The loss is permanent and sensorineural (which means it is caused by a problem in the inner ear or auditory nerve rather than an issue with the structure of his ear). The audiologist was honest but kind as she told us that Max’s hearing won’t improve in the future, but there’s a chance that it could be progressive. She was generous with her time while she answered all of our questions and gave us easy ways to contact her if we thought of more after we left (and we definitely did).
Within two months of that appointment, Max had his hearing aids. They don’t ‘fix’ his hearing and he’ll still encounter challenges with hearing, especially in environments with a lot of background noise, but they allow him to pick up on more of the speech sounds that he needs to develop language. We know they’re working because he is adding new words to his vocabulary weekly (although his favorite by far is still “ball”).
We’ve had a few ABR tests since the first one and have now graduated to behavioral booth testing, where the audiologist plays a tone through earphones. If Max looks toward the sound, the audiologist rewards him by activating a light-up animatronic dog that is inside a box on the wall. After each tone, we refocus his attention to the front of the booth. We’ve been through enough sessions now that he is trained to look for the dog to light up when he hears the tone. The audiologist is able to measure his hearing based on if he turns his head to look for the dog or not.
We’re still filling in the gaps of Max’s hearing chart so the audiologist can program his hearing aids perfectly, but his loss has remained in line with the original diagnosis for every test. Our newest challenge is that it’s hard to determine whether Max is not responding in the booth because his hearing has declined since his last appointment, or if he’s just being a stubborn toddler. We have an appointment tomorrow, so let’s hope he gets a kick out of that light-up dog in the booth (and doesn’t rip the earphones out a dozen times).
The hearing loss diagnosis was an expensive and challenging process, but we're so grateful for early intervention and that our path led us to St. Joe! Max is all smiles on Wednesday mornings when he 'talks' to Ms. Colleen (even if he does try to hang up on her several times a session by closing the computer screen) during his speech therapy sessions.
I would be so grateful if you would consider a donation to St. Joseph Institute for the Deaf in honor of my birthday and/or Max. Thank you to my incredible friends and family who have already supported this organization that means so much to us!
