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In the beginning, was it there?

I was born in 1951. My mother had a terrible strep infection during her first trimester with high temperatures and treated with sulfa.

I was born some months later apparently a normal baby with no early problems noted. The doctor did tell my mother at some point after my birth that I nearly had a cleft palate. I suspect that was after my upper front teeth arrived and were spaced widely apart. I had a normal early childhood ... tormented by my older brothers like most "youngest" children, but not noted to have any particular problem hearing.

I started school in first grade as the baby in the class at 5 with my 6th birthday coming in November. I was tremendously ill that whole year ... I had red measles, German measles, and chicken pox ... however, there was still no notation of a problem with my hearing. It was in second grade when there started being a problem with my hearing. My teacher noted that I was a compliant child when I heard the instructions, but that I seemed to keep my attention directed elsewhere most of the time! Sometime later, the school did an audiometric test of my hearing ... I had a problem!

I was taken to a leading ear doctor in Atlanta where we lived. He confirmed the hearing loss and said we needed to take my tonsils and adenoids out. That was done when I was in third grade. Still I couldn't hear. At some point, he put his hearing aid in my ear which made things louder! He said he didn't think a hearing aid would help. When I was in seventh grade, he retired and I was taken to a new ear doctor. This doctor was young but had retired from NASA. He tested my hearing extensively. I can't remember all that he did, but the tests were done over 2 days so it was a lot! He said some of the hairs in my cochlear had stopped growing! He also said hearing aids wouldn't help.

I was at an age where the ridicule my hearing loss produced amongst my classmates was psychologically harmful, not that it was noted by anyone but me. I was ashamed. I had also developed a toe that was stunted and two fingers also. The fingers weren't that noticable, but the toe sure was and I refused to take my shoes off in front of anyone!

Skip to age 25. For some reason a friend of the family had been talking to my parents about getting hearing aids for me. I reminded them that I had been continuable told that hearing aids wouldn't help. They said for me to go and see anyway and that they would pay all the costs involved including the cost of the hearing aids. I went to the partner of my previous doctor who had retired in the interim. Again, I was told that hearing aids wouldn't help! I told the doctor that my family really wanted me to try them out so he sent me to a local school for the deaf and hard of hearing. The audiologists there were overwhelmed that I had managed to succeed in school despite the level of loss that I had and that my speech was virtually problem free! They recommended a hearing aid and off I went to procure them.

Well, let's just skip to today as I could complete a whole book about this. My hearing tests exactly the same today as it did when I was seven ... 50 years ago! That makes me feel that it was not a disease induced hearing loss because those are usually progressive. So what caused my hearing loss? I have maintained that my hearing loss was caused by a genetic mutation that occurred when my mother was so sick. That is exactly the same time that tissue is forming for ears, fingers, and toes! I have been told by a research physician that I had a chance correspondence with that I should not feel so individual! He says what I hypothesize isn't true. How does he know? He's supposed to be an expert in the genetic causes of hearing loss yet he couldn't even propose a known genetic cause for my hearing loss.

By the way, hearing aids do help. If you are reading this and your doctor has said they won't help, override him/her! Try out hearing aids. They are not perfect. They do not correct 100%, but they do make conversation a lot more understandable than it was before.

Ellen Luse

Thanks for sharing your story. You are a tremendously brave person. Screw all those doctors that say there is no solution. Always have hope and faith. I believe too that the cause of your hearing loss can be traced to your mother's illness.

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