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: morahchayah@gmail.com
Thanks so much for your true life experience and clarifying this subject so people can reach their own decisions
But I still think that most of us would still rather go out with people who we know don’t have this problem. I could write articles about how manageable life is with 30 other diseases, exposing “myths” that people have with them, and still wouldn’t want children that have those diseases.
Kudos to Dor Yesharim for giving the option for screening more diseases. As far as I’m concerned, the more the merrier.
… without telling me that you didn’t read it.
Dor Yesharim was founded to test for life threatening and debilitating conditions…. There are other organizations that will test for everything if you are so inclined.
There are many many shidduchim already being turned down because of this, a much higher rate then from the few conditions they tested for previously. Part of their selling point was only turning down 1/100 shidduchim.
From your tone, I assume that this issue is personal to you. You probably have someone close that has hearing loss. And I’m not trying ro be offensive in any way. However, unlike you, there were certain things said in this article that didn’t make sense to me. I’m referring to what the author writes in point 5 (which is the point you and I are disagreeing on). And when you look it up, you’ll see that the author doesn’t understand how certain diseases work. Here goes: The author writes in point 5: “Especially when considering the proliferation of other… Read more »
Down Syndrome is a chromosol abnormaility not a heriditery genetic mutation. What I said was that in an era of inclusion where we encourage families to keep and raise and the community provides support children with Down Syndrome, why the sensationalist advertising for a chronic condition comparable to the other ones mentioned. You don’t need to do genetic testing for the other chronic conditions . If your family has someone with it, then there’s a high likelihood that at least one of your kids will have it. If your goal when looking for a marriage partner is how can I… Read more »
Down syndrome is genetic but can only be screened for in the fetus.
Amniocentises is a test on amnionic fluid which will show it.
It is caused by a duplicated gene in the fetus.
The parents wont show it as it comes about as the fetus is formed.
There are other genetic abnormalites that are only found in the fetus as well.
What I was saying was that there’s no gene you can test for in the parents. Which is what Dor Yesharim is all about – screening the parents genes
Perhaps what should be clarified is that Down Syndrome is genetic in the sense of the extra chromosone 21…but it is not HEREDITARY. I.e..it doesn’t mean that the syndrome can be passed down through subsequent generations.
Any miscomparisons in point 5 are details that are irrelevent to the general point that we should not test for everything under the sun even if we could as you suggest by saying “the more the merrier”. The truth is that the more conditions we test for the more shidduchim get nixed and decisions as to which conditions to test cannot be taken lightly. That is why dor yesharim makes this panel optional and for many years they have had some conditions that are MUCH WORSE than hearing loss optional because they are not life threatening. As an aside you… Read more »
When I wrote “had this problem”, I meant had this gene. Sorry for not being clear.
While I don’t think we need to test for everything under the sun, I do believe that as time goes on, we should test for more diseases. This is because, as time goes on, certain diseases are being eradicated, we therefore can afford to screen for a new disease for every disease that doesn’t exist anymore. For example, now that Tay Sachs doesn’t exist anymore in the frum community, we can try getting rid of hearing loss, a disease that’s not so terrible (as the article explains nicely, that it’s a manageable life). That way, slowly but surely we can… Read more »
Anyone who understands genetics knows that Tay Sachs and other conditions which Dor Yesharim tests for are not eradicated they are actually more prevalent. Dor Yesharim makes sure that someone who is a carrier does not marry another carrier to ensure that they do not have kids who suffer from that condition. They obviously do not make sure that carriers do not get married at all. Since every carrier who has kids passes along that gene to 50% of their kids, a carrier with 6-10 kids creates 3-5 new carriers. As time goes on, less people are affected but more… Read more »
It’s too bad that they can’t test for extreme insensitivity. They have seminars for that. You should register.
I was not trying to be insensitive, and I don’t see anything that would be majorly insensitive in my comment. Just because someone unfortunately has children with a medical issue, doesn’t mean I can’t disagree with them. What’s funny is, that if we’d compare my comment with yours, I think it’s pretty clear which comment is more insensitive.
Thanks for the article
By number 8 is the exact reason that dor yeshirin is offering this testing..
Thats for someone who HAS hearing loss. Dor yesharim is testing for people who are CARRIERS of hearing loss and don’t show any “symptoms”
If each parent doesnt have hearing loss, but they both carry the gene then each kid has a 25 percent chance of having hearing loss. This is the scenario Dor Yesharim is working to prevent. Even in families with 10/12 kids, it’s very unusual to have more then two kids with hearing loss when its genetic because the chance is small.
If one parent has hearing loss and the other parent doesnt have the gene then their kids will not have any chance of getting this hearing loss.
There can be other causes of hearing loss in the fetus such as viral diseases like measles during pregnancy
Also they are not testing for every cause of hearing loss
It’s genetic and 50% chance of giving to children. If one parent has it, then either the child has or is not even a carrier. (carrier only if you have hearing impairment) I have hearing loss and I know that dor Yishorim can’t do anything about it for future generations because it has nothing to do with whom you marry… That said, hearing impairment is Not life threatening and something you can live with till very very old age… No pain involved, just wear the hearing aids and all is good!
I have hearing loss as well, and I would not want my children to go thru this.
Truly beautiful!
If there’s a test that can identify if my kids will be lame or not, I will take that test. Sure we have wheelchairs and ramps, but seriously? Is this really the argument?
The comparison to down syndrome has nothing to do with anything, you are comparing dating to when someone is actually pregnant.
I’m so happy about this article. We had a heated discussion about this around our Shabbos table. We always though Dor Yeshorim was about preventing LIFE THREATENING illnesses. Does this mean that if gene mutations were found for IBD, IBS, asthma, chronic sinusitis, diabetes the list is endless.. we’d have the option to test for those panels as well? What is the newest criteria? The amount of knowledge of how genetics work, is already sorely lacking. How many people stay away from families from a genetic illness already like a hot potato, not knowing what is explained in the article?… Read more »
Testing for life threatening genetic problems which are not curently treatable is very important. What is sad is that in the frum world the shidduch process focus is on arbitrary checklists instead of on human beings. No one knows how a person will deal with life.
If I could have done premarital testing for ADHD, I would have!! If I could test to ensure that my kids won’t have ADHD, I WOULD HAVE!! Nobody is denying that people with illnesses and disabilities deserve a full life with full respect and full accommodations. But there are things we can avoid and things we can’t. I dont want a kid with learning disabilities I don’t want a kid with horrible eye sight I don’t want a child with ADHD The fact that I have them is a sign of golus. I love them and provide them with all… Read more »
You probably would never get married because there is always something to check for.
There will be fewer serious genetic diseases if we can find a cure for gezhe-itis
At my children’s wedding, I threatened to withhold payment if the music volume wouldn’t be lowered. I payed anyway…. I apologize to myself and all our guest who may have suffered irreversable hearing loss due to the band’s refusal. For me, I’m an older mother. For the chosson/kallah and friends – they are the parents that will eventually pass down this loss. Somehow, the music at my wedding was freilach and everyone enjoyed dancing Eli Lipsker did a fine job! There was no emphasis on nigunim only on normal decibal. THIS IS where you should be putting your effort –… Read more »
We are told to look for yiras shomaiyim and midos tovos when dating. Yes, there are other factorswhich help determine if the shidduch is shayech or not as well. But screening for hearing loss can be done through a regular test, this is not the point of dor yeshorim. Dor yeshorim is to prevent life-threatening illnesses such as Tay-Sachs. I feel disappointed that the medical advances we see today is being used to give a foothold for the yetzer hara to get in and stop shidduchim. A hearing loss is not a big deal, I have a son with hearing… Read more »
Out of all the reasons you can turn down a shidduch, genetic reasons are a very good one.
The fact that we can test for genetics these days, is because God wants us to get rid of our diseases. And that therefore, our bashert will be someone that doesn’t share with you a genetic mutation. And if so, on the contrary, it’s easier these days to find your bashert, there’s a smaller pool of people to choose from
The argument against screening for more diseases was always that at some point the balance of benefit vs harm tips to the side of harm for the community. We have many singles already struggling to find the right person. The more we choose to narrow our dating field by refusing to date people with predisposition to various (non life-threatening) conditions, the greater that challenge becomes. Hearing loss is common, (often not genetic) and usually manageable. Since E very single person carries genes to predispose them to some disease, you cannot scan for the perfect healthy specimen, there is no such… Read more »
“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. ”
^wow! the Frum community should be focusing on eradicating these toxic devices from their lives and their children’s lives! Internet is evil! We should be making sure All frum weddings and events have music that is below the level of ear damage. (if they have music at those events.)
Some people are carriers for depression. Should we start testing for that too?
I think they do in Australia.
Sign language is NOT becoming a lost art. This is an insult to the deaf community who have a ruch culture and history. There is no need to choose between sign language and English, in fact it is proven to be beneficial to teach both side by side even with hearing children. Additionally, teaching babies sign language gives them the skills to communicate at an earlier stage in life which causes them to be less frustrated than most babies who are unable to communicate their needs. There is nothing wrong with being deaf and not getting cochlear implants, which DO… Read more »
I have a few children who have hearing loss due to a genetic mutation. We requested that Dor Yeshorim screen all our children to see if they are carriers, and if they are, we ask any prospective Shidduch to screen so that the gene will not affect any future children. While hearing loss is not necessarily a huge handicap, it can severely hamper quality of life, ability to communicate effectively etc.
I am a senior citizen. When I was 2, I was seriously ill and lost my hearing in one ear. It did not affect my schooling, as I was always placed near the front. In fact, I was chosen as an honor student for my scholastic achievements in Jr hi and hi school. I didn’t get a hearing aid till I turned 70. Meanwhile, I worked, got married and raised a family. BH
We are born with tiny hairs inside our ears. As we get older they normally slowly drop off, causing a decrease in hearing, especially in the elderly. However, loud noise also causes these hairs to drop off. This can cause a decrease in hearing loss prematurely. My husband had normal hearing until he started working in a facility at age 35 where he was subjected to very loud noises from airplanes taking off and landing. By by the time he was 45 he needed hearing aids. I also have hearing loss due to an illness. We recently went to a… Read more »
Thank you for your article Chaya. It was informative and helped me see things clearer. I wanted to comment about number 9 in which you mention that Usher’s is a debilitating disease that Dor Yeshorim tests for. I just want to say I have Ushers and as of now, I am not debilitated BH. I want to meet and hear perspectives of fellow patients, as I have started a support group for Jewish people like me with Ushers Syndrome. If you know of anyone, please let me know!