Death, Grief, and Cicadas: How a Mother is Helping Others Navigate Loss

It’s springtime in southern Indiana.

The snow melted long ago, taking with it the last gray vestiges of winter, and in its place, it left life—blooms and greenery, daffodils and dogwoods.

It also left a mother sitting in a graveyard, grieving the death of her 6-year-old son, Cody.

“Spring is cruel for somebody who is grieving,” says Kim Hieftje, PhD, Cody’s mother, and associate professor of pediatrics at Yale School of Medicine (YSM). “My son just died, and the world was trying to be beautiful and renew.”

That spring also brought cicadas. It was 2004, and the Brood X cicadas, the largest brood of periodical cicadas, had reached the end of their 17-year waiting period and were emerging from the ground. When she sat with Cody at his grave each day, Hieftje was immersed in the deafening chorus of millions of cicadas that were rejoicing in the prospect of new life.

Cicadas are the loudest insects on Earth. Their collective song can surpass 100 decibels, a sound loud enough to overwhelm jets and jackhammers. They drowned out everything, Hieftje says.

“The cacophony of millions of cicadas just gets into your bones. It numbs your brain. It’s meditative in some ways,” she says. “But there was also a lot of frustration too. The cicadas are in the best moment of their lives, and in contrast, I’m here in the absolute darkest, worst moment of mine.”

The experience stuck with her, and 17 years later, when the cicadas emerged again, she wrote an essay about the experience, “Year of the Cicadas,” which was later published in JAMA.

But she felt she could do more. During the 17 years since Cody’s death, she’d gone back to school, gotten her PhD, started a new career at Yale making and researching video games. So for the past three years, Hieftje—with a team of collaborators, including everyone from family and friends to cicada scientists—has been developing a virtual reality experience that immerses players in her journey after Cody’s death.

“The whole goal is to try to help others better understand the uniqueness of parental grief and child loss,” Hieftje says.

Cody died in March 2004 from a congenital heart defect. He was sweet, loved to laugh, and was a best friend to many. He was smart. He loved books and Legos, and most of all, trains—he always kept a little toy train in his pocket or bookbag, which Hieftje would later shake out of the laundry or find on the floor.

Cody would be 27 years old now. It’s difficult, Hieftje says, to imagine what he would be like, what he would look like, if he would still love trains.

“When he died, I kept thinking about the cicadas returning in 17 years. I couldn’t imagine the next 17 years without my son. The thought of the pain of missing somebody that hard for the rest of your life was really terrifying,” she says.

The sound of cicadas was not the only backdrop to Hieftje’s grief that first summer. She remembers another chorus, too, a steady stream of well-meaning platitudes from those who didn’t understand her grief or were made uncomfortable by it. She remembers being told things like “he’s an angel, now,” “God needed him in heaven,” or even “you’re young, you can have more children.”

“People don’t really know how to interact with you or how to help you, so they say things that, in their mind, will bring you comfort, but can actually be very isolating,” Hieftje says. “It just made me feel more disconnected and made me feel more alone in my grief.”

The experience compelled Hieftje to help others who were going through the same thing. She went on to complete a PhD in family grief and loss with a dissertation on how parents find meaning in the death of their children through shared narrative.

Her research pivoted when she arrived at Yale as a postdoc, but she would find her way back to that early work.

In the basement of a building just south of the New Haven Green lies an unusual lab space. Instead of lab coats and test tubes there’s a scientist wearing a virtual reality headset waving her hands around. A couple of grad students huddle around one of the computer stations lining the brightly painted walls, excitedly discussing the vaping prevention game they’re developing. Hieftje and her co-director/founder of the lab, Asher Marks, MD, associate professor of pediatrics at YSM and director of pediatric neuro-oncology, joke together with the easy rapport of close friends as Hieftje grabs a giant plush cicada from a sofa.

The headset-wearing scientist is associate director of the lab Veronica Weser, PhD, and she’s immersed in a virtual neonatal intensive care unit (NICU). Weser has been working on a game where players take care of Cutie, an infant alien who is highly susceptible to human germs. The player can see brightly colored germs throughout the hospital room, and to keep Cutie healthy, they must use virtual hand sanitizer to clean their own hands, sanitize Cutie’s toys, and ensure visitors have clean hands.

In real life, only about 40% of NICU visitors engage in hand hygiene when they enter the unit. Bumping it to even 60% could have enormous benefits, Weser says.

“If we could do a little by having this fun game for parents, it would make a huge difference for all the babies that are there,” she says.

When Hieftje first came to Yale in 2009, she started working on serious games, video games used for education or training. It was a big step away from her PhD work, but as a lifelong gamer and self-proclaimed “super nerd,” it was a welcome one.

“It had only been five years since Cody had died, five years of doing research on death and dying and child loss,” Hieftje says. Staying in that space for so long was difficult; shifting away from it became necessary. “Going into serious games saved me emotionally in a lot of ways,” she says.

Hieftje became interested in how virtual reality could be used to modify behavior. In 2016, she started her own lab where she began making games for kids around topics like vaping and nicotine prevention. In 2020, she met Marks, who was interested in using virtual reality as peer support for teens and young adults with cancer. The two decided to combine their work, and shortly after, XRPeds was born.

Today, the group is working on several extended reality and virtual reality-based games and research projects. Along with “Cutie,” which will soon head to the Yale New Haven Hospital NICU, there’s “Shady Grove,” a web-based game that teaches players about trafficking prevention. Other games cover topics such as alcohol harm reduction, nicotine and vaping prevention, and sexually transmitted infection prevention, among others.

“Of all the didactic ways we teach, oftentimes they leave out that opportunity to practice skills,” Hieftje says. “But with games, you can practice and fail, and we want people to fail in a safe space; we want them to make mistakes and then try again.”

In 2021, the Brood X cicadas returned. Hieftje went back to Indiana to visit Cody’s grave and sit with the cicadas again. They sounded a little different, she remembers, and she was different, too.

Soon after, equipped with her virtual reality expertise and the support of her team, she began working on the “Year of the Cicadas” virtual reality experience, which allows users to interact with distinctly emotional moments after Cody’s death: decorating a Christmas tree with the train ornaments Hieftje’s mother sent every year; walking down the hospital hallway for the last time; looking at pictures Cody’s friends drew while the sound of well-meaning but isolating platitudes grows louder and louder; sitting in the graveyard, completely immersed in spatial audio of cicadas.

“That’s the good part of what virtual reality can do for us. It can take us out of the real world and put us into somebody else’s world, and that’s really what my goal was,” Hieftje says.

For the experience, Hieftje worked closely with Gene Kristky, PhD, an entomologist and professor emeritus at Mount St. Joseph University, and a leading expert on periodical cicadas. And the game, which features music written by Hieftje’s daughter, Bree, builds from personal stories and memories shared by family, friends, and teachers who knew Cody.

“I had my own experience with losing Cody, but I was so in my own grief that I never thought about my family’s grief,” Hieftje says. “I think one of the coolest parts was to think of this as a collective story. It was the grief of my family. It was the grief of the schoolteachers. It was the grief a community.”

After researching this collective story, much has stayed with Hieftje. When she spoke to her dad, he found it too painful to speak directly about his grandson but was able to recount memories by playing the guitar. She learned that Cody’s elementary school kept a section of train books in the library in his honor. A childhood friend of Cody’s told Hieftje he was applying to medical school to become a cardiothoracic surgeon because of Cody.

The experience highlights the importance of both personal narrative and shared narratives in making meaning through grief, and Hieftje hopes it will allow for continued narrative building.

“We live in stories, not statistics,” she says. “Stories allow us to continue to add chapters, especially when it’s something like grief and loss and meaning making. I can’t imagine where I’m going to be in another 13 years when the cicadas come out again, how many more chapters there will be that will undoubtedly be impacted by things that have happened. But the story has to continue, and I think that’s fascinating.”