You may have noticed those "hearing for the first time" videos popping up more frequently in recent years. Some have even noticed the uptick of videos and have wondered if there’s something in the water causing this recent surge of deaf babies needing hearing aids.
These videos are a direct result of legislation that was passed 10 years ago which now requires all hospitals to screen newborn babies hearing before they are discharged. The EHDI (Early Hearing Detection and Intervention) was passed just 2 years later which has helped fast track hearing loss diagnosis in children and offers resources for intervention.
These policies have created a new type of awareness of pediatric hearing loss in the form of viral "hearing for the first time" videos. Each video is a celebration of how far we have come and a reminder of the long road ahead of us.
The stories behind these viral videos are unique. Hearing loss journeys are like snowflakes for no two journeys are a like. Here are a few of our favorite videos and their unique journey behind the video.
First, we begin with the video that began the phenomenon of those precious baby "hearing for the first time" videos. Lachlan’s video earned a whopping 15 million views on YouTube earning him the most viewed video in the infant category. Lachlan was born with permanent moderate/ severe hearing loss of the inner ear (cochlea and auditory nerve). His team fitted him with hearing aids which amplify sounds and pitches that he cannot hear. Lachlan was initially fitted with two hearing aids but he eventually went on to replacing one of his hearing aids with a cochlear implant.
Charly comes in at a near 2nd in the infant video category with 14 million views in a little over 1 year. Charly was born with permanent profound hearing loss and those hearing aids are only temporary for her. With her hearing aids she was able to hear a just a limited amount of tones (think of Charlie Browns teacher). She will need to trial hearing aids before she can be medically qualified for cochlear implant surgery (FDA approved for children 12+ months). Charly recieved her cochlear implants in the Fall of 2018 and has been working hard to catch up to her hearing peers. Follow Charly and her family on Instagram.
In 2008, Jonathan and his family were sent into an emotional roller coaster ride after Johnathan had contracted deadly brain infection called meningitis that left him deaf and with motor delays. Survivors of meningitis are often at risk of hearing loss if they have not already lost their hearing. The damage doesn’t stop once an individual has recovered. Meningitis survivors like Jonathan have a looming timeline ahead of them as their hollow cochlea may start ossifying and turn into a solid bone thus leaving no room for an implanted electrode to be inserted. Jonathan received special consideration for cochlear implant surgery 5 months earlier than the FDAs age requirement of 12+ months of age. Today Johnathan uses a combination of spoken language and ASL to communicate.
Greyson was born with a rare form of hearing loss and would not benefit from hearing aids or cochlear implants. Greyson was born without auditory nerves which is necessary for sending information from the working ear inner mechanism to the brains auditory cortex located near the brain stem. Greyson recieved an Auditory Brainstem Implant (ABI) which is a newer technology in respect to cochlear implants technology that’s been on the market for over 35 years. Greyson was the first American pediatric recipient of an ABI and he immediately reacted to auditory processors being switched on. Auditory Brainstem implants technology offers individuals the ability to have environmental awareness and can help assist with lip reading. Many Individuals with an ABI often rely on a visual language mode like American Sign Language or Cued Speech for their main form of communication.
Teyana was born with a conductive hearing loss in one ear. This means that she has a perfectly functioning cochlea and auditory nerve, but sound vibrations have trouble reaching the cochlea through the ear canal. Tenyana wears a bone conduction hearing aid which is attached to a snug headband. This bone conduction hearing aid sends sound vibrations through her skull and cochlea. Bone Conduction technology has become widely popular in recent years as consumers are opting for the comfort of bone conduction headphones to listen to music.
Sarah Churman is our last viral video and hers is unique although she is not a child. Her video brought tears to viewers around the world and became the first viral "hearing for the first time" video. She even went on to appear on The Ellen Show twice! News outlets had spread misinformation that Sarah had received cochlear implants, but this was not the case. Sloan was fitted with an Esteem hearing implant, a lesser known type of hearing technology. The Esteem works by replacing those three tiny ear bones connected to the ear drum. Its main function is to relay the sound vibrations from the ear drum and carry those vibrations to the cochlea (where sound is perceived).
This new era of viral videos is creating awareness about pediatric hearing loss like never before. Every video is a celebration reminder of the progress that parents, professionals and politians have made to improve the lives of deaf and hard of hearing children. We can now embrace diversity on a whole new level.
In the US health care system hearing techonology is considered a vanity and coverage is not protected under the ACA. Most families in the US are still footing the bill to pay for these hearing aids out of pocket and these expenses don’t count towards their health care deductibles. Today there are 23 states who have stepped up and have passed mandates that require insurance coverage for pediatric hearing aids. Even with these mandates there are loopholes which allow insurance companies to deny hearing aid coverage for children. We have made great strides in the past 10 years and we have still have a long way to go.
If you live in one of the 27 states without a mandate then please contact your representative and educate them about the need for pedicatric hearing aid coverage.
Click the link below for an updated list of all the US states with hearing aid mandates.
https://www.asha.org/advocacy/state/issues/ha_reimbursement.htm