“She’s ready to go home now! Oh—and she failed her hearing test in one ear. It’s probably nothing. Here’s a pamphlet. Call someone to schedule a follow-up test next week.”
When the nurse handed me my newborn daughter, Audrey, I was expecting to hear that we could take her home with us. What I wasn’t expecting was the news that she’d failed her newborn hearing screening. At that time, I didn’t even realize that they did hearing tests on newborns. In my post-partum haze of hormones and sleep deprivation, all I could imagine was a baby in a booth wearing headphones and raising their tiny chubby fists every time they heard a beep. I had no idea that I was soon going to be more experienced in all things hearing loss related than I ever thought possible.
As we shared our worries about the test with family and friends, we got only reassurance: the neighbor’s baby had the same thing happen, but it turned out to be fluid in the ear canal from birth. My mother-in-law’s neighbor’s sister’s firstborn daughter failed the newborn screening in the hospital but passed her second test. And so on. We became convinced that everything was fine.
The next step was a visit to an audiologist at the local children’s hospital for an auditory brainstem response (ABR) test. The audiologist put electrodes on Audrey’s forehead and behind each ear, then inserted baby-size earbuds and played a series of clicks. As those clicks were played, her brain waves were recorded and analyzed. At the end of the test, the audiologist said, “Well, you don’t HAVE to get her one, but I recommend a hearing aid for her right ear.” I was in shock. It wasn’t fluid, like everyone else said it probably was? The audiologist informed me that it was a sensorineural hearing loss, one of the three types of hearing loss explained by Dr. April Burdette in her article, “Hearing Loss: How Your Ear Works.” Sensorineural hearing loss is the most common type of hearing loss, and is always permanent. Hers was considered to be on the border of mild/moderate loss, so they gave us the choice of whether to have her fitted with a hearing aid or not.
The audiologist recommended that we next see an ENT for a CT scan to determine whether there were any physical issues at play, as well as a geneticist to rule out syndromes that could have hearing loss as a marker. Her CT scan showed that there was in fact a physical component to her hearing loss: she had a cochlear malformation (also called a Mondini malformation) in both ears—but her hearing loss was only in the right ear. No one could really explain why that might be, though they did speculate that perhaps the tiny hair-like cells in the inner ear that send signals to the brain could be damaged in one ear but not the other. The geneticist had us get several vials of blood drawn, which were then shipped off to Cincinnati Children’s Hospital, which specializes in genetic testing for hearing loss. Genetic factors play a role in about two-thirds of childhood hearing loss, but thankfully, all of those tests came back negative.
Audrey’s father and I initially struggled about whether to get her a hearing aid. She had one ear at 100% and the other at about 50%. Did she need it? Certainly while she was a baby, no one would think anything about it, but what about as she got older? Would kids tease her? Would SHE want to wear it? We eventually came to the conclusion that it was our responsibility as parents to give her the best opportunities in life that we could, and that included allowing her to hear as well as possible while she was learning to speak. During this time, we were also exposed to various hearing loss philosophies: that of many in the deaf/hard of hearing community who chose sign language over hearing aids and cochlear implants and felt strongly that others should do so as well, and those who were of the mindset that children should have access to every possible tool available in order to hear and speak.
Audrey was fitted with an adorable pink hearing aid at 3 months old. We occasionally got some flak about our choice to go with a hearing aid for an infant. People commented that she couldn’t talk, so why wouldn’t we just wait until she was older? A parent advocate who was assigned by the state to work with us told me that I should skip the hearing aid and just go with sign language. Curious and probably well-meaning adults in stores would stop and stare, then ask if her hearing aid—which had a little flashing light on it to indicate it was working—was a Bluetooth earpiece. My reply was always, “Yes. She’s on the phone with her agent right now.”
Audrey wore her hearing aid daily until she turned 3, at which time she declared, “I DON’T WANT THIS” while pulling it out of her ear and dropping it in the trash. We fished it out, but she refused to ever keep it in again after that. And after listening to the hearing aid myself using a special tube, I could see why she might not have liked it—hearing aids magnify ALL sounds, not just conversations, so someone shouting or an object hitting the floor would be extremely loud, and there was always a background hissing sound.
Audrey is now 4.5 and doing wonderfully. She hasn’t had any issues with her speech (for which I give credit to the wonderful speech therapist who worked with her from the time she was 3 months old until she turned 3 years old). She always hears me—but that’s not to say she always listens.