Born Almost Deaf, Karen Did Not Let Rubella Define Her

Editor’s note: Dr. Karen Sadler has a PhD in science education and a master’s degree in neuroscience. She is also deaf. As a result of a rubella infection her mom had while pregnant with her, Karen was born with limited ability to hear and eventually lost all hearing. We are grateful to Karen for sharing her story, and we hope she will inspire you as much as she has inspired us.

Her mom’s rubella infection during pregnancy robbed Karen of the simple joy of hearing birds sing or leaves rustle in the breeze. Yet, Karen considers herself lucky — lucky because she’s “only deaf.”

Rubella is a viral infection that is most dangerous when it occurs during pregnancy because often the unborn baby’s development is affected. Some babies die in utero, and those who survive, as Karen did, are often born with congenital abnormalities, including blindness, deafness, heart defects or mental deficits.  

A vaccine didn’t come in time to save Karen from the effects of congenital rubella. The first rubella vaccine was licensed in 1969. Karen was born in 1956.

Recently, the Vaccine Education Center had the opportunity to talk with Karen about her life experiences.

The following interview has been edited for length and clarity.

Can you describe what happened to your mom when she was pregnant with you?

My mom was babysitting two children in Chicago who got rubella. She and my dad didn't think much of it because my mom didn't know that she was pregnant.

My parents then moved from Chicago to Salt Lake City, and it was there that she discovered she was more than four months pregnant, meaning that she had been exposed to rubella during her first trimester of pregnancy. 

We know that rubella during pregnancy can harm the unborn child. What have you learned about that?

Rubella tends not to make the mother sick, and my mom was no exception. She never realized she was infected with rubella until later when I was diagnosed. During a rubella infection, the virus travels through the placenta and infects the fetus. The highest risk for negative outcomes occurs when a woman is infected during the first trimester, which unfortunately was the period during which my mom was exposed.

There are many birth defects that can come from being exposed to rubella. I'm lucky the only thing is that I am completely deaf in both ears. I was born with some hearing in my left ear. My right ear never ever heard. Over time, I lost the little bit of hearing that I had.

However, with the little bit of hearing I had in my left ear, I managed to meet most of my milestones as a child as far as speaking is concerned.

The doctors never brought up anything about my hearing loss. It was 1956. They certainly didn't check children's hearing at that point like they do today when infants are born.

My parents got a little suspicious when I wouldn't respond to them or my sister. They started getting extremely suspicious when I was about 3 years old.

What effects did your diagnosis have on you?

 I was born in 1956, my parents didn't start to suspect I was deaf until about 1959. At that time, we were in Kansas, and mom and dad were taking me to doctors and having me checked out. But back then, they didn't automatically put a hearing aid on a child. I vaguely remember starting to have hearing tests on a regular basis around age 5.

When we moved back to California in 1961, my parents took me to a hospital in San Francisco, and I remember them telling my mom that I needed to have speech therapy. That was a major difference in my life.

When I finally got my hearing aid in the summer between seventh and eighth grades, I turned to my mom and said, what's that sound? And she started crying because that was the first time I had actually heard a bird. There were lots of things I didn't hear. I couldn't hear wind or anything with high frequency. And if you know, female teachers in schools are all high-frequency voices. That made it difficult to hear and understand in many of my classes.

Can you describe your early life and your years in school?

My parents included me in everything with my sisters, even to the point where when my sisters would sing in church, my mom and dad would make me get up there and sing with them.

I went to a normal school. The first, second and third grades were great. I had no problems with teachers and experienced no discrimination. However, during fourth grade, I started having problems with school. At that time, they used the Columbia Broadcasting System, where they would actually use radio from CBS and teach lectures about history and other subjects. The problem was that I lipread, and this was something I could not lipread.

With lip-reading, you need to be at the front of the class where you can actually see the teachers and maybe turn around and see people speaking in order to get the most information that one would get from the class. Instead, we were using a radio system that lectures.

That became a huge problem in the fourth, fifth and sixth grades. So, my favorite thing to do was to go to the library and grab a bunch of books. Then I would go into our backyard where we had an old buckeye tree. And I would go up in that tree with my German Shepherd underneath me and read all day.

I experienced bullying in sixth through eighth grades. Typical situation, you're the only kid who's deaf in a school full of hearing kids. The one good thing during that time is I started having male teachers. That made it much easier for me to hear and understand what they were saying. Especially in seventh grade, one of my best teachers was a science guy. He used to play professional baseball, and he was a real comedian. He really took me under his wing. My father was an engineer. So, between my father and the science teacher, I learned to love science.

When I got to high school, everything changed. I really had a much better time in high school. I don't know exactly what changed. I started getting more involved in things. I learned to play the trombone. I learned to play the flute. My sisters and my mom were all pianists, so I learned to play the piano with them. Before I got a hearing aid, I would actually get my books that I like to read and sit up against the piano so that I could feel the music as my sister played. That was the main way I listened to music at that time.

During my last year in high school, we moved to Pennsylvania. And that was nice for me because nobody had previous expectations of me or previous feelings about my hearing, or my lack of hearing. At that time, I would wear my hair down so people couldn't actually see my hearing aid. And if I didn't show it to them, a lot of people just assumed I was hearing. I had fun at high school. It was wonderful.

How have your experiences shaped your views on vaccination?

Growing up in the 1950s and 1960s, I was exposed to all the circulating viruses that every child got exposed to at that time. I had measles, mumps and chickenpox. I had scarlet fever several times.

When I had my three children, I did not hesitate to get them vaccinated to protect them from the very things that I had. I didn't want my kids to become deaf. I didn't want my kids to be sick.

My personal experience with infectious diseases had a big impact on me and my feelings about vaccination. I learned not to sit back and allow others to determine my education. I made the decision to educate myself about vaccines and the diseases they prevent.

What do you think is the most important thing for members of the public to consider when they are viewing science or health information online?

I often come across misinformation on social media and other places where people express their opinions about science, and they have no background in medicine. Please remember that other people most often have an agenda. When you look up information, please make sure you get it from a medical professional. It's very important to read from trusted sources.