BLOGWhy I Won't Use Genetic Testing to Ensure My Children Don't Inherit My Hearing Loss

By Marissa Mayer Posted on: | June 02, 2015

My family tree is peppered with people who have different degrees of hearing loss. Around age 5, my grandmother became profoundly deaf. The same thing happened to my dad. Around that same age, my brother began to lose his hearing. Then it was my turn—I failed my first hearing test in kindergarten.

Year after year my hearing became progressively worse. I got my first pair of hearing aids in the fourth grade. It was a day I had dreaded for years. I was completely devastated and embarrassed—so I hid them.

I somehow thought that it was better if no one knew why I was missing things the teacher said, or if people assumed I wasn't paying attention in class when I was called on to read the next paragraph (despite desperately trying to watch the previous reader's mouth for some sort of clue as to where we were in the textbook). I somehow thought it was better that people assumed I was just rudely ignoring my classmate down the hall calling my name, or wondered why I said "what?" all the time.

I grew up knowing that God had made me this way, but I didn't understand it. I didn't know why and I didn't like it.

The thought of passing on my hearing loss to my future children, or even finding a man who would be willing to put his future children at risk, was depressing. My only solace was genetic testing.

When I was in junior high, a scientist wanted to study my family's hearing loss and isolate the gene that was causing it. They collected blood samples from as many members of my family as they could get their hands on. I believed if they could isolate the gene, by the time I had kids, they would have the means to replace the gene in utero and prevent my future children from sharing my fate.

But in college I began my slow journey towards self-acceptance. There was no one thing that happened, but I gradually began to realize that being different wasn't a curse. I took my eyes off of myself long enough to see that there were differences all around me, and that I was blessed—not in spite of my hearing loss, but because of it.

Would I be the writer I am today if I wasn't so dependent on the written word for communication? Or if I hadn't spent my childhood reading captions on the TV? Would I have the same compassion and empathy for people who are different or are struggling? Would I have been able to give hope to a mother who thought her child's deafness was a death sentence, or encourage elderly gentlemen who think getting hearing aids that will improve their quality of life is the end of the world?

For every challenge I face because of my hearing loss, there is blessing as well. That's how I see people with Down syndrome too. That's why it breaks my heart when scientists praise the new blood test that provides a "much more accurate way to screen for Down syndrome."

What the media often fails to mention when it covers prenatal testing for Down syndrome is that at least 90% of children with a prenatal diagnosis of Down syndrome are aborted.

So while pediatric geneticists think this is "very good news for pregnant women," it is pretty bad news for kids with Down syndrome.

These kids may be different, but that doesn't make them worthy of elimination.

"People with Down syndrome are artists. They're poets. They're athletes. Their lives are happy ones and fulfilling ones." Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital in Boston, told NPR. "I have a sister with Down syndrome who certainly is a life coach for not only myself but for my entire family. If the new tests become a routine offering, then we have to start to ask: Will babies with Down syndrome slowly start to disappear?"

I know how easy it is to want to put a stop to challenges altogether. I was there. I thought my future children would be better off if they were nothing like me and I was willing to play God to make it happen. But when we focus on the challenges, it makes it that much harder to see the good.

Do I pray that my future children have a perfectly working set of ears? That they can avoid some of the difficulties and insecurities I faced? Yes! But let's be real—challenges come in all forms. Everyone has them. Doing away with hearing loss or Down syndrome does not prevent that.

I still don't want my future children to be like me. But I don't mean my hearing loss—I mean my belief that I was inferior because of it.

Marissa Mayer

Senior Web Writer

Marissa Mayer is an Arizona native who fell in love with the written word at a young age.

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