The signs appeared soon after Beth Leipholtz ’15 gave birth to her son Cooper in September of 2019.
“Minnesota has hearing screenings for newborns before you leave the hospital,” recalled Leipholtz, a former journalist who now works as web designer and runs her own photography business.
“He didn’t pass initially, which isn’t all that abnormal. There can be fluid in the ears and it resolves in a few days. So they told us to come back in three weeks and redo it. In the meantime, he was born with a patch of white hair and the rest was really dark. I jumped on a few Facebook groups because I was curious. I asked anyone if they’d seen that before and someone said it was connected to Waardenburg syndrome. The more I looked up the symptoms, the more it started to be clear that’s what he had.”
After she and her husband Brandon (Carlson) brought Cooper back in for further examination, that was indeed the diagnosis, meaning the couple had to begin preparing to raise a deaf child.
“In the moment, it was very overwhelming,” Leipholtz said. “I was just wrapping my head around becoming a mom, so to add all this, was kind of a lot. In retrospect, though, it was good to discover it right away when I was on maternity leave. There was so much happening and I had to be in action all the time. There wasn’t really time to dwell on emotions.
“Brandon and I both have our hearing, so we didn’t know anything about sign language or cochlear implants (an electronic device that allows those with severe hearing loss to gain some of it back). There were so many unknowns and not having that foundation was the scary part. But once we started to find out more and began to take action, it got a lot easier.”
Beth and Brandon made the decision to raise Cooper bilingually, getting cochlear implants to allow him to hear, but also teaching him sign language.
“He doesn’t have (the implants) on 24-7, and this gives him the ability to communicate either way,” Leipholtz said. “He has the unique ability to be able to shut the rest of the world off, and he takes advantage of that if he’s feeling super-stimulated and just needs to disconnect.
“The other thing is that technology can fail, and it has for us. When that happens, we’re still able to communicate with him. We wanted him to be able to embrace both worlds (the hearing and Deaf cultures) from the very beginning.”
Leipholtz also began sharing some of her family’s journey on social media, getting advice and support from others while offering it herself.
“I’ve always been an external processor,” she said. “Writing and sharing is how I deal with stuff. I started with a blog. This was still pre-COVID. Once the pandemic came along, and video really took off, I started shifting in that direction. As time went on, I began to realize I could be a resource like the ones I found so valuable in the beginning. I started hearing from families in similar situations, or even families raising kids who have other disabilities.”
Leipholtz also began writing books. Her first, “Hello Holland: The Path to Embracing Your Child’s Hearing Loss,” was published in 2020. Her second, “The ABCs of Inclusion,” is a children’s book first published in 2023. She found children living with a variety of disabilities whose names began with each letter and shared their stories.
“Some were kids I know,” said Leipholtz, who was back on campus Wednesday (Oct. 8) for a speaking engagement and to meet with a social media marketing class. “Some are from families I connected with on social media. Then there were some stories I needed help finding to make all the puzzle pieces fit together.”
The book was recently picked up by Little, Brown and Company, an imprint of Hachette Book Group, who re-released it Sept. 30 with copy updates and new artwork.
“I’m excited for it to have a chance to reach a wider audience,” Leipholtz said.
More than anything, Leipholtz hopes to provide families in situations similar to the one she, Brandon and Cooper went through hope and encouragement, and to let them know how rewarding it can end up being.
“Kids can go on to lead a great and full life,” she said. “I wouldn’t change our situation for anything. His hearing loss is so much a part of him now, I can’t imagine him without it.”