By Chaya Raichik
I was shocked to see Dor Yesharim’s ad on COLlive for their newest genetic testing panel. In bright stop-sign red, it says COMMUNITY ALERT. Immediately, you start wondering, is it a new disease? Have they discovered something awful that is critically endangering newborns en masse?
Then you notice that it’s about hearing loss. Oh, you think. Deaf people. Yeah, it’s pretty hard to be deaf. All that sign language and not talking and probably they are also homebound and have a miserable life. And it’s Dor Yesharim, so they know what they are talking about.
As a mother of two kids with hearing loss, I’m getting non-stop questions about the panel. Let me share with you the top 10 myths about hearing loss.
1. All kids with hearing loss are deaf: FALSE
Hearing loss falls on a spectrum from mild to moderate to severe to profound/deaf. Labeling all kids with hearing loss deaf is like labeling all kids with vision loss blind. Children with mild and moderate hearing loss can hear most sounds naturally but may have trouble hearing all the sounds in a conversation. Hearing aids help amplify sounds so they can hear all the speech sounds. Children with severe and profound hearing loss usually get cochlear implants. Cochlear implants replace the cochlear of the ear to give the child direct access to sound.
2. Technology for hearing loss is big, bulky and looks funny. FALSE
50 years ago, it was very rare to see three-year-old kids in glasses. They were big and bulky and kids got teased for them. Nowadays, who blinks an eye when they see a kid in glasses? So too, with hearing loss. Nowadays, there are all sorts of cute hearing aid/implant colors for kids. They come with Bluetooth that can stream to your phone or computer. Hearing aids for adults are nearly invisible.
3. Kids with hearing loss need sign language and will never learn how to read: FALSE
Almost all kids with hearing loss today are able to be successfully amplified. Babies can get cochlear implants as young as six months. (There is a small percentage of children who try cochlear implants and it doesn’t work) Sign language is fast becoming a lost art, practiced by those who grew up in previous generations before technology advanced to today’s level. Unlike yesterday’s speech therapists who taught children to lipread, today’s cutting-edge educational research in audiology and speech therapy teaches children how to listen in noise and there are specialized reading programs. Children who are diagnosed early and amplified on time can often outgrow therapy once they learn how to read in early elementary school. Those who are diagnosed later can also have successful outcomes but may need therapy for longer.
4. Kids with hearing loss are suffering and are severely debilitated or disabled: FALSE
Hearing loss is a wide range. Most children with hearing loss learn in mainstream schools, grow up to get married and fully function in society without you knowing any difference. In fact, the US government / legal definition does not consider hearing loss a disability unless someone is profoundly deaf. Children with hearing loss do not qualify for any respite or other extra medical services either. There is an extremely small subset of children who are profoundly deaf and not able to be amplified. That is very difficult for the children and families. While even for those who are amplified, it’s not a walk in the park, and the early years require a lot of therapy, but it’s comparable to children with other learning challenges who require extra help in school and then can succeed in life.
5. We should be working to eradicate hearing loss.
It’s not my place to decide these weighty matters. But I will point out that in an era where we encourage families to have children who they know may have Down Syndrome, which is arguably much harder and requires lifelong support, it’s hard to understand the focus on hearing loss. Especially when considering the proliferation of other conditions amongst frum kids that can also be genetic such as diabetes, severe allergies, autism, ADHD and any number of other things that cause challenges to life but are not life-threatening when managed. It is especially curious as Dor Yesharim is known to focus on severely debilitating diseases.
6. Premarital testing and being particular with Shidduchim can ensure my children won’t have any medical conditions. FALSE
The fact is that EVERYONE is a carrier for SOMETHING. It’s not possible to prevent kids from being born with medical conditions. Nor can we know if they will develop something later in life.
7. Hearing loss is genetic and by doing premarital genetic testing we can reduce the prevalence of hearing loss. FALSE
Although it may be possible to reduce the number of children born with hearing loss through premarital testing, the fact is that there has been an explosion of people being diagnosed with hearing loss. Due to the advent of personal music devices, earphones and earbuds, car radios and ridiculously loud subwoofers at concerts and weddings, the CDC estimates that one in 8 teenagers has hearing loss in both ears and 1 in 6 has hearing loss in one ear. This is from studies from before Covid! Senior Citizens have a hearing loss rate of 1 out of every 2! (PS, maybe wedding halls and/or musicians should start providing ear headphones for kids as a courtesy as part of the hall package or gasp! Lower the volume! Think about it: You’ll turn down a shidduch but won’t lower the volume??) Even without all of this, it is super common for children to have fluid in their ears at young ages, which can also affect their hearing and speech comprehension. (And should be treated ASAP!) In short, we are working to eradicate something which will affect most people at some point in their lives.
8. If I marry someone with genetic hearing loss, then all my kids will have hearing loss. FALSE
If spouse A has genetic recessive hearing loss but spouse B does not have the same gene, then NONE of the kids will have hearing loss. Again, NONE of the children will have this hearing loss, even if one parent has hearing loss. As long as the second parent does not have the same gene, NONE of the kids will have this hearing loss.
9. Ok so maybe I won’t do the hearing loss panel.
I’m not a Rav or your Mashpia so it’s not my place to tell you what to do. One of the syndromes they test for is for Usher Syndrome, which is very rare and causes profound deafness and blindness. That is definitely something that’s debilitating. I’m not sure if you can ask to be tested for just the severe ones. For someone with hearing loss, doing premarital testing can ensure that NONE of their kids have hearing loss. Also, my concern is more about the stigma of telling families that hearing loss is something that should be eradicated, especially when it’s so common and not life-threatening and often, children can lead successful, happy lives as fully functioning members of society.
10. We should be working to educate people on hearing loss: TRUE!
Pediatricians and parents should be alert. Your child is probably fine, but if they are not responding to sounds then a quick check in the doctor’s office can give answers. Children can be hearing-impaired in just one ear and they should also receive amplification and therapy early on. If your child was recently diagnosed with hearing loss, you are not alone! Getting them aided or implanted early and beginning therapy right away is crucial and can lead to successful outcomes B” H. If you’re an adult and you or a loved one is having a hard time hearing, then look into amplification! Recently the FDA approved over-the-counter hearing aids and now you can buy hearing aids like you buy glasses. I recommend going to an audiologist first to get your “prescription,” and then you can just walk into a store or search online to get a pair. Stream your phone calls to your ear and hear the difference! (Ask a Rav about using and charging on Shabbos and Yom Tov, and wearing while hearing the Torah, Shofar and Megillah).
No, I don’t work for a hearing aid company and I am not an audiologist. I am just a mother of two children with hearing loss working to help the world understand and so you can be informed about what hearing loss really is. Thank you for reading.
If you’d like to join our support group for mothers of children with hearing loss, email: [email protected]