The vaccine whisperers: Counselors gently engage new parents before their doubts harden into certainty

SHERBROOKE, Québec — As a mother, Marie-Hélène Étienne-Rousseau wasn’t dead-set against vaccination, in a mind’s-made-up, won’t-even-talk-about-it sort of way. But she was vociferous enough to have the nurses worried. Again and again, she’d explain that she’d read plenty online. That she’d heard frightening stories about these shots. That she wasn’t convinced they were good for her kids.

And protecting her kids was at the forefront of Étienne-Rousseau’s mind. How could it not be? She was 26. Her youngest lay in an Isolette in the neonatal intensive care unit, a mask over his nose to help him breathe. Anyone walking by could watch the delicate fluttering of his heart and lungs, visible in a rainbow of squiggles on a bedside screen. His name was Tobie.

He’d arrived early, at only 28 weeks: a tiny, 2-pound creature, the size of one soda can stacked on another. He was her fourth child in four years. She’d had preemies before — her son Samuel at 34 weeks, her daughter Jessica at 35 — so she wasn’t as panicked as she might have been. Still, she’d cried when she went into labor with Tobie, wondering if the doctors could save him. “I knew a thing or two about really small babies,” she said, “but 28 weeks! That might have consequences, I told myself; parts of him might not be fully formed. Will he be able to see? Will he be deaf?”

Her husband was home taking care of the other kids when she gave birth close to midnight on Sept. 15, 2018. They showed her the baby for a few seconds. Then, because he needed oxygen, they whisked him away.

He’d be in the hospital for five months — long enough for his internal bleeding to stop, for his surgical wounds to heal, for his first round of vaccines to be due. The surgery his mother had authorized; the immunization, against eight infectious diseases, she refused.

So, early this year, not long before Étienne-Rousseau would finally click Tobie into his car seat and drive him home to the village of Notre-Dame-des-Bois — “Our-Lady-of-the-Woods,” 14 miles from the Maine border — the nurses tried one last tack. They called in Dr. Arnaud Gagneur.

He was an unassuming emissary. As a neonatologist from the north of France, an M.D.-Ph.D., and a speaker of clipped European French in a province of slurred consonants, he might’ve come across as slightly snooty. His attitude, though, was anything but. As he prepared to talk vaccines with Étienne-Rousseau — a hardliner, he’d been told — he purposefully set his expert opinions aside. Too often, he felt, doctors try to think on behalf of their patients and alienate them in the process. He hoped he could avoid that trap. “I didn’t want to put any pressure on her,” he said.

As public health tactics go, it sounded counterintuitive. Across the American border, the measles caseload was inching its way toward a 27-year high. In some hard-hit communities, authorities would respond by threatening the unvaccinated with fines, banning them from public spaces, and temporarily shuttering their schools. Dr. Robert Jacobson, a Mayo Clinic pediatrician who’d been flown in to teach New York state clinicians how to combat vaccine hesitancy, likes to emphasize that “the parent … really is hoping that the professional can give the professional’s recommendation.” By comparison, Gagneur’s no-pressure strategy could seem dubious — gentle where others were being forceful, well-meaning but potentially toothless.

That isn’t how the Québécois government saw it. Though authorities didn’t shy away from saying they’d pull un-immunized kids out of school during a 2015 measles outbreak in Lanaudière, by the time Étienne-Rousseau had given birth to Tobie, the provincial health ministry had spent millions putting Gagneur’s methods into practice, hiring a whole new workforce to enact his nonjudgmental probing of parents’ beliefs and anxieties about vaccines.

Vaccination counselors, the new employees were called. In 2017 and 2018, over 50 of them were stationed in more than a dozen of the province’s largest maternity wards, with plans to hire one or more at every last Québec hospital where mothers give birth by 2021. The counselors are themselves a kind of prophylaxis. Their job is to ask about parents’ worries long before anyone’s trying to vaccinate their kids at 2 months of age, to answer whatever questions come up — in other words, to inoculate against the misconceptions that might infect them online.

Yet, unlike most medical interventions, this one unfolds entirely on the family’s terms. “Parents appreciate not being told, ‘This is what you have to do, this is what will be good for your kids,’” said Dr. Danielle Auger, who leads the program at Québec’s ministry of health and social services. “It’s more of a dialogue.”

Clinical trials are already wrapping up in British Columbia, Ontario, and Nova Scotia, and Gagneur has applied for funds to test the idea in Europe, the United States, and Australia. For Dr. Saad Omer, director of the Yale Institute for Global Health, the initiative is part of an exciting shift, from hopes of curbing vaccine hesitancy to studies about how to go about it. “The effort it takes, the cost it has — other places can learn from it, including places in the U.S.,” he said.

Gagneur, who works at the University of Sherbrooke’s Fleurimont Hospital, about two hours from Montréal, knew this program probably wouldn’t change the minds of those who’d become hardened in their rejection of vaccines. Rather, it was meant to assuage parents’ uncertainties about the shots, to prevent their hesitancy from becoming entrenched. Étienne-Rousseau had, in fact, met with one of the hospital’s vaccination counselors, but the mother wouldn’t budge.

“They called me one night to say, ‘The baby’s leaving. … He’s not vaccinated. Can’t you come talk to the mother?’” Gagneur remembered. “They said, ‘If there is anyone who can succeed with this parent, it will be you.’”

Like many investigations into the failures of modern medicine, Gagneur’s began with a death that didn’t need to happen. The deceased was only 6 months old, just learning to sit upright, just starting to gum food from the edge of a spoon.

As a medical student, Gagneur had been drawn to pediatric intensive care: deducing what was wrong with a failing neonate, coaxing the heart back into cadence, pumping the tiny lungs full with a balloon. Often, what was wrong was an infection, and he started studying the responsible bugs. He swiped yeasts from infants’ rectums, mouths, and the skin behind their ears. He sampled coronaviruses from the orifices of both babies and the staff who took care of them. He got a reputation in the hospital: “Nurses would see me coming and say, ‘Uh oh, are you going to pick my nose?’”

His expertise meant that, once he took a hospital job in Brest, at the northwestern tip of France, he had a good chance of seeing any kid in the region who contracted bacterial meningitis, a dangerous infection that causes inflammation of the membranes around the brain and spinal cord. It was rare, but not rare enough. Babies would arrive limp, running fevers of 102 or 104, almost comatose. Older kids would come in with hellish headaches, unable to move their necks, afraid of the light. Sometimes the bacteria had eaten holes in the brain; sometimes they’d spilled into the bloodstream, damaging the vessels — red spots appearing on the skin and widening into patches of necrotic black.

Gagneur would slide a needle between the child’s vertebrae, break through the spinal cord’s leathery casing to siphon off fluid for the lab. As it came out, he could already foresee the results: What should have been clear, water-like, was murky, thickened with infection.

“You quickly see who’s going to make it, who’s going to slip away,” he said. He never got used to it. He couldn’t help seeing his own children in his patients. He still can’t shake the image of one boy: 7 or 8, nervous system raging with meningococcus, blood pressure plummeting. “We had to intubate him, and to do that, we had to anesthetize him,” Gagneur said. “It was traumatic, to tell a child, ‘Don’t worry, I’m putting you to sleep so I can treat you,’ — to do that, and then he never wakes up.

“It leaves you scarred. Sure, you might be trained to do this, sure, this is your job, but … I was a young doctor, and I had kids the same age.”

In France, parents pick up vaccines themselves at the pharmacy, storing the vials in the fridge until their child’s next doctor’s appointment — prophylaxis nestled incongruously between the eggs and the yogurt. As soon as meningococcal vaccines hit drugstores in the early aughts — even before the French government officially recommended it — Gagneur bought three doses and immunized his kids on the living room couch.

The 6-month-old who would end up reshaping Québécois public health policy arrived in the emergency room in Brest a few years after that. “Often, when we have child deaths like that, the parents’ first questions are, ‘What could I have done? Is there something I should have done differently?’” Gagneur remembered.

Gently, not wanting to heap blame onto this newly bereaved mother, he asked if she’d heard about the vaccine against pneumococcal meningitis, the kind of infection that had killed her son. No, she said, she hadn’t. But when she returned to the hospital to fill in paperwork and make arrangements with the morgue, she went to see Gagneur. She held up a vial that she’d discovered in her fridge. Was this the vaccine he’d been talking about?

It was in part thanks to that forgotten vial that Mathieu Savard found himself in the maternity ward of Fleurimont Hospital, in Sherbrooke, one morning over a decade later. He went from room to room, knocking on doors, hoping to find one where the parents were awake and not already occupied with another health professional’s spiel.

Room 5625 was dark and cocoon-like when he stepped in, as if the parents were trying to convince their newborn he was still nestled in the womb. Doféré Samuel was in a moon-and-spaceship onesie, being held gingerly, almost disbelievingly, by his father, who shuffled from foot to foot in a lullaby-like dance.

Savard introduced himself, pulled up a chair. “Often the first question that I address with parents is: What’s your opinion about vaccines for your baby?” he said. “What do you think?”

The mother stirred in the bed. She was lying on her side, knees folded up toward her stomach, still exhausted from giving birth. Her name was Affoué Marie-France N’Da. “Well, it has to do with his health,” she said quietly. “It’s good, it’s positive.”

Her husband, Tenon Charly Kone, murmured his assent.

“Well, what I’m hearing is —”

But before Savard could finish his sentence, he started hearing something else.

“Maybe there are side effects we should be following, though,” N’Da said, her voice a little stronger this time.

Savard smiled. “What I’m hearing is maybe a little fear about side effects,” he said. “What I’m hearing is the protective parental instinct, that you want to protect your baby.”

When he asked them what, specifically, they were worried about, there was a pause.

“Later in life, I don’t know, maybe the kid will have issues,” the mother said.

“Malformations?” the father offered.

“Malformations,” the mother said.

The couple embodied exactly what public health experts worry about. They didn’t seem like it on paper: both engineers with a self-professed belief in science, both largely convinced that vaccination is a routine part of keeping their family safe — in short, about as far as you can get from the caricature of the conspiracy-minded, doctor-wary anti-vaxxer. Yet in compiling 10 of the threats demanding attention in 2019, alongside such horrors as Ebola and climate change, the World Health Organization included “vaccine hesitancy” — not just refusal, but reluctance as well.

Such attitudes are on a continuum, the officials in Geneva seemed to be saying: If we want to reverse the recent jump in measles cases — a global upswing of more than 30% since 2016 — we can’t focus only on the die-hards. Even more urgent are the worries this couple shares with Étienne-Rousseau: the creeping hesitations gleaned from Facebook, the niggling fears, the kinds of doubts that seed themselves along the ragged edges of our rational minds.

“If you look at the data nationally, the proportion of parents that refuse all vaccines is pretty small and has been pretty steady over the last few decades,” said Dr. Amanda Dempsey, a University of Colorado pediatrician and researcher. “But the proportion of parents who opt out of certain vaccines is growing, as are parents who get all of the vaccines but raise questions or concerns about what they’re doing.”

Answering those questions is a minefield of power dynamics. The reception of what you say is entirely dependent on how you say it. Julie Leask, a vaccine-hesitancy researcher at the University of Sydney, in Australia, remembers working with homeless teen parents and realizing how useless it was for her to instruct them on matters of public health. “‘Don’t heat your baby’s bottles in the microwave. Don’t smoke while you’re pregnant. Don’t put your baby to bed with bottles of milk or juice — it’ll rot their teeth.’ I would tell them that, or make little pamphlets, and it made no difference, not a skerrick of difference,” she said. “Telling people how to be more healthy usually doesn’t work, you have to give them ownership over those decisions.”

Gagneur first got an inkling of how he might do that through a stymied research project. He’d been trying to track how much a new rotavirus vaccine reduced the number of babies hospitalized with diarrhea in and around Brest. To collect data, he’d recruited enough physicians to staff a small hospital. The trouble was, there were no data to collect: Parents were simply refusing the new vaccine when it was presented to them at their children’s 2-month appointment, saying they needed more time to consider the pros and cons.

The idea came from some of the group’s pediatricians. What if they started talking up the study right there in the maternity wards, as soon as the baby was born, two months before the vaccination would actually take place? That way, parents had time to mull it over before anyone was coming near their child with a syringe.

“I said, ‘Bingo, let’s go!’” Gagneur recalled — and soon, almost every parent they approached was saying yes to the new vaccine. In 2008, he got a job in Sherbrooke, and once transplanted to the New World, that experience became a kind of creation story, a possible answer to the grim question posed by the death of a 6-month-old. “If it works for a new vaccine, why wouldn’t it work for all vaccines?” Gagneur asked himself.

From addiction and weight-loss psychologists, he borrowed a technique called motivational interviewing, in which a counselor asks questions, like a less abrasive Socrates, helping the counseled examine their own uncertainties. From his French pediatrician colleagues, he borrowed the notion of staging such conversations in the maternity ward, within a day of a baby’s birth.

Mixed together, the two gave preliminary but promising results. Among over 1,000 mothers at Gagneur’s own hospital, a conversation with a vaccine counselor bumped the percentage who said they intended to immunize their children from 72 to 87. It wasn’t just talk, either: When he expanded his research to three more hospitals and randomly assigned parents to get either a motivational interview or a pamphlet about vaccination, his analysis of early data showed an immunization rate of 80% in the kids of those who spoke to a real live human being and 74% in the families who’d been handed a piece of paper. It was enough for Québec’s public health agency to email Gagneur in August 2016, interrupting his holiday in the south of France to ask him to for a province-wide protocol.

For those eyeing the program from abroad — including Leask and Dempsey, who’ve signed on to take part in Gagneur’s international trial if it gets funded — the sticking point is often economic. How do you implement such a program in a place where health care isn’t government-run? Does it make sense to hire a whole workforce to focus solely on vaccination? Why not throw in breastfeeding, too?

The counselors themselves leave such questions to the professors and the government officials. Their focus is on the parents, their child, their questions. Savard tries to empty his mind before he knocks on every new door, to remind himself not to blur one family’s concerns with another’s.

He doesn’t look or sound much like the other hospital workers who’d stopped into Doféré Samuel’s room to test his hearing, screen his genetics, teach his parents car-seat etiquette, and extol the virtues of breastfeeding. The son of a wood-and-shavings supervisor in a pulp-and-paper town, Savard had worked in marketing, selling additives to keep concrete pourable, and in physiotherapy, helping stroke patients learn to walk again. Rather than white coats or office garb, he favored black T-shirts, the single breast pocket patterned loudly with flowers or sea creatures. Snaking up his right arm was a Polynesian tattoo: a whole lexicon of symbols recreated from anthropologists’ drawings after the tradition had been wiped out by colonization. He addressed parents with the informal pronoun “tu” rather than the buttoned-up “vous.”

His loose-limbed casual air was deliberate, an attempt to set his interlocutors at ease. He wanted them to feel comfortable enough to repeat whatever misinformation they might have read or heard and come to believe — that vaccines cause autism; that flu shots, like the white trails airplanes leave behind, are part of a government plot to poison the population.

He didn’t explicitly tell them they were wrong. When Kone and N’Da postulated that the injections might cause malformations, he never directly confronted them about it. Instead, he asked them if he could complete the picture for them, and, when they said yes, walked them through the side effects that doctors had actually observed: rash, fever, pain at the injection site, sleepiness, loss of appetite, occasional diarrhea.

It might seem risky, not to challenge erroneous and potentially dangerous beliefs head-on. To Savard, though, the bigger risk is breaching the relationship of trust he’s carefully built. As he put it, “If you start judging parents’ opinions, if you start contradicting what they’ve said, you’ve already lost them.”

Étienne-Rousseau knew that feeling all too well. She felt it every time she took her kids to see the doctor in Lac-Mégantic, the nearest town with such services. “It was as if she were attacking me,” Étienne-Rousseau said, “as if she were accusing me of wanting my kids to get sick. As if I were a bad mother.”

Convictions can be hard to trace, like idle habits picked up from family members and friends. So it was with Étienne-Rousseau’s suspicion of vaccines. It had been there, everywhere around her, for as long as she remembered. She’d been partially immunized as a baby, but that stopped at 9 months of age, when an elementary school teacher in Drummondville adopted her and her brother. They were simply a family that did not get vaccines. The kids didn’t question it; that’s just what they did.

Her social sphere expanded when she was about 13. Her mother, fearing that the one boy in the household needed male companionship, packed him off to spend weekends and summers with some folks she knew out in the country. The Plourdes already had 17 children; what was another one to house and feed? Étienne-Rousseau began to go there, too, and their three-person family became part of a clan.

The father was a bricklayer, and he’d built a big brown house on an unpaved road outside the village of Notre-Dame-des-Bois, where locals say the electricity is liable to cut out in spring when all the households start boiling down their maple sap at once. (The municipality blames fallen branches.) The kids ranged around the countryside, four-wheeling, playing volleyball, fishing. At mealtimes, they sat at the table on long benches. In summer, the fields erupted into constellations of tall meadow buttercups.

Étienne-Rousseau now lives in that big brown house. She fell for one of the Plourde boys — “He became my brother before he became my husband,” she jokes — and together they bought the place. The field where they played volleyball as kids is now their cow pasture.

In some ways, their life is a vision of rural Québec from another era: devoutly Catholic, rhythms changing with changes in the weather and the land. Étienne-Rousseau’s husband runs a maple syrup business with three of his brothers in the mountains north of Montréal, hours of driving away. “From January to early May, I’m pretty much a single mother,” she said, laughing. When her children get rambunctious, she tells them to go feed grass to the chickens.

Then again, she gets her groceries from Walmart, her messages from a smartphone, her ultrasounds from a university hospital. Her reluctance about vaccines was fueled as much by social media as by her sisters-in-law. Her doctor in Lac-Mégantic didn’t help. “When someone can actually answer my questions, and not just throw me some script they’ve learned by heart, then I’ll consider it,” she remembered thinking.

That was what the hospital staff hoped Gagneur could do. He came by to see her on a winter evening after his shift, around suppertime. Tobie, big-eyed and alert, almost ready to be discharged, now lay in a quieter part of the neonatology unit, away from the hubbub of nurses’ computers and the milk-preparing station.

She had a whole litany of questions. Was it not too much, to combine the vaccines for three different illnesses at once? Was there a chance Tobie could get these diseases from the vaccines themselves? Given that he was premature, given that he was so tiny, wouldn’t the vaccines be even harder for him to take than they’d be for a full-term baby? Why immunize him against diseases that we no longer see? If vaccines were as good as doctors seemed to think they were, why were there so many websites warning against them?

Gagneur listened, letting her steer the conversation, answering her queries one by one. Vaccines were nothing in comparison with the storm of germs a child might be exposed to in the classroom. Tobie couldn’t get the diseases from the shots because they contained weakened or killed pathogens; at most, he’d have a low-grade fever or brief malaise. If anything, being premature made a baby more vulnerable to infection, making the vaccines even more important.

He said that we no longer see these diseases precisely because we vaccinate against them, but that older physicians remember seeing babies die from these conditions. He explained that there had been fake studies — data fudged to make vaccines seem dangerous — that doctors had disproven again and again but that still circulated online. He knew it was easy for parents to get caught in an eddy of misinformation through the algorithms of search engines and social media accounts.

They talked for over an hour beside Tobie’s bed. Gagneur kept the tone light; he didn’t describe in detail the tiny corpses he had tried in vain to save. He was honest, that he worried about unvaccinated children, but he didn’t press her to make a decision: “I told her, ‘I’ll leave you to think about it.’”

That felt foreign to her. “Once we were done, he told me that, whether I chose to vaccinate or not, he respected my decision as someone who wanted the best for my kids,” she remembered. “Just that sentence — to me, it was worth all the gold in the world.”

Then, nothing happened. Étienne-Rousseau fell back into her routine. She had four kids to care for, all of them in diapers — she bought them in big boxes at Walmart, in three different sizes. That was where she saw the article. She’d just finished stocking up on supplies, and had stopped in at the adjacent McDonald’s for a Big Mac when the front page of a local paper caught her eye.

The headline was about measles, and the risks for unvaccinated children in Estrie, the region of Québec where she lives. “It really struck me that my kids weren’t vaccinated yet,” she said.

For Tobie, who was still in the hospital, that changed right before he was discharged. For his three older siblings, the first vaccinations took place at the kitchen table, a public health nurse giving the shots, Étienne-Rousseau soothing her kids with milk and cartoons. Her sisters-in-law were surprised to hear about the reversal. She explained her decision, she hoped at some point, they, too, might sit down with Gagneur. But she didn’t try to convince anyone. She knew perhaps better than anyone that they were, to the best of their abilities, just trying to protect their kids.