If vaccine data doesn't convince you, this group hopes a grandmother's story will

When Deb Robarge’s son contracted meningitis at just 7 months old, the infection changed the course of her family’s life.

He was too young to receive the meningitis vaccine. He stopped eating. His brain swelled. Doctors warned Robarge to prepare for the worst as the infection rapidly spread.

“It's so insidious, and it comes on so fast,” she said.

Her son survived, but the illness left him with profound hearing loss and significant long-term needs. Robarge left her job for years to care for him, and the family eventually moved to the northwest side of Indianapolis so he could attend the Indiana School for the Deaf.

Robarge says many grandparents of her generation share similar memories of frightening illnesses that are now preventable. She and others are now sharing those accounts through Grandparents for Vaccines, a new volunteer group with members across the country.

The organization helps grandparents share what life was like before vaccines for diseases like polio, meningitis and measles. Supporters say those firsthand memories can cut through misinformation and help younger parents understand what’s at stake.

Or, as Robarge, who now has eight grandchildren, put it: “If you don't believe your own grandma, who are you going to believe?”

This comes as the U.S. Health and Human Services Secretary Robert F. Kennedy Jr. continues to question the safety and effectiveness of several vaccines and adjusts federal vaccine schedules and recommendations. Last week, the Centers for Disease Control and Prevention's vaccine advisers recommended narrowing the agency's hepatitis B immunization guidance for newborns.

Teri Mills, a former nurse practitioner and member of the leadership team for Grandparents for Vaccines, said the group wasn’t created to discuss statistics or research. Instead, its purpose is to talk with younger generations about the lived experiences many grandparents had with diseases people now take for granted.

“We're here as storytellers, because grandparents are often the ones who pass down the family history — and unfortunately, this is a part of our history we haven’t shared before,” Mills said. “You always want to keep the conversation happy,” she added. “But one of the ways we can do that is by keeping our kids healthy.”

Their concerns are not hypothetical. In Indiana, immunization rates for children ages 19 to 35 months fell from nearly 70%in 2019 to 56% in 2023. 

“People don't see the benefit, they see the risk, and they don't understand that if they don't vaccinate, they're going to see the risks, and you don't want to see that again,” Dr. Robert Frenck, the director of the Vaccine Research Center at Cincinnati Children’s Hospital, told WFYI last year. 

Robarge, who later served as the director of nursing at the Indiana School for the Deaf, hopes her family’s experience nudges more people to see vaccines not just as personal protection, but as a collective responsibility.

“Somehow we've got to develop this spirit of, we're all in it together — that we're a community again,” she said. 

Farrah Anderson is an investigative health reporter with WFYI and Side Effects Public Media. You can follow her on X at @farrahsoa or by email at fanderson@wfyi.org.