Parents

How social media helped Randi Zuckerberg diagnose her toddler son's hearing loss

Media executive and mom of two boys Randi Zuckerberg, 34, often relies on social media and her virtual village of moms for support and information. But she never imagined that a little Facebook nostalgia would lead to her family getting a diagnosis for her younger son's hidden hearing problem.

"I had second child syndrome," Zuckerberg told TODAY Parents. With her first son, Asher, Zuckerberg said she and husband Brent were "so on top of everything," but with Simcha (nicknamed Simi), they relaxed. By the time he was 20 months old, though, Zuckerberg began to worry about her toddler, who had yet to say "Mama" or "Dada" and was still not walking.

Friends reassured her about her "easy baby," saying, "'You're so lucky, just feel lucky.'"

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Courtesy of Randi Zuckerberg
Randi Zuckerberg credits social media for helping her explore and identify her youngest son's hearing loss.

Zuckerberg is the New York Times-bestselling author of "Dot Complicated: Untangling Our Wired Lives" and creator and executive producer of the Sprout Channel's animated children's series "DOT.," which debuts October 22. She's also the former director of marketing at Facebook, where she worked alongside her brother, Facebook founder Mark Zuckerberg. She said she ignored her natural instincts and pushed aside her nagging feelings about Simi until one day last April, when she was doing her "routine morning social media check" and clicked on Facebook's "On This Day" feature.

A post from years earlier popped up in which Zuckerberg had detailed all the words — and even sentences — her older son was saying on the day he had turned 18 months old. That's when all the warning bells went off in Zuckerberg's head, and she knew her intuition had been right: something was wrong with Simi.

"My kid's brother had full sentences at the same age, and he still couldn't say 'Mama,'" Zuckerberg said. "What's going on? That was the moment I knew I needed to seek professional help."

An audiologist eventually diagnosed Simi with hearing loss caused by an ear infection when he was very young that didn't fully resolve. After a minor surgery and aggressive speech therapy, little Simi, who is now 2 years old, has most of his hearing restored and has made huge strides.

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As Zuckerberg struggled with emotions surrounding her son's diagnosis, she found other moms online who had similar experiences. "I felt a lot of guilt, too, because, oh my gosh, how can my child get to 20 months old and be that hard of hearing and I not realize it?" Zuckerberg said. "It was really helpful to me to turn to a lot of moms on social media that I didn’t know but who were in the same position I was."

Zuckerberg said her experience with Simi's hearing loss diagnosis showed her once again both sides of the complicated balance between our digital and individual lives. "On one hand, I was able to seek a professional diagnosis for my son because of the social media community," she said, "But at the same time, I should have trusted my own gut instead of trusting the echo chamber around me. Social media can be a wonderful thing, but you have to do your own research and trust your gut."

Zuckerberg's story has a happy ending. This morning, as Zuckerberg left for work, Simi sent her out the door by saying, "Love you, Mama, bye-bye!"

This story has been updated since it was originally published at 4:27 p.m. ET on October 19, 2016.

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