By Lauren Vogel
Congenital syphilis, which passes from mother to baby during pregnancy, isn’t something clinicians expect to see in a developed country with universal health care.
But, as syphilis has resurged over the past decade, including among young women, Canada has reported record spikes in the number of babies born with the disease.
Without treatment, babies born with congenital syphilis can suffer terrible health consequences — from bone damage and severe anemia to meningitis and nerve problems that can cause blindness and deafness.
In both 2019 and 2020, more than 50 infants across the country were diagnosed with early congenital syphilis, according to a Public Health Agency of Canada (PHAC) report.
Prior to 2017, you could count the annual cases on one hand.
As long as syphilis is circulating in the community, “everybody’s at risk,” says Kellie Murphy (PGME ’98), a professor at Temerty Faculty of Medicine’s Department of Obstetrics and Gynaecology.
Indeed, she cautions that thinking of any one group as having a higher risk may be misleading.
Many expecting parents are blindsided when they learn they’re infected because they may not have symptoms or they believed their partner was monogamous, says Professor Murphy.
Syphilis is known as the “Great Imitator” because its symptoms can easily be mistaken for other infections and conditions, complicating diagnosis in both adults and babies. One of Murphy’s patients saw four different doctors for a variety of symptoms — rash, mouth sores, vision problems — but only learned that her symptoms were related to syphilis when she got pregnant.
The tip of the iceberg
Congenital syphilis is almost entirely preventable, and treatment is highly effective. Experts say that seeing any cases signals a failure of health care systems to reach affected parents and babies.
National numbers reported by PHAC likely don’t capture the full toll because they only include confirmed cases within two years of a live birth.
Syphilis can cause miscarriage, and it’s estimated that roughly 40 per cent of babies delivered by parents with an untreated primary syphilis infection are stillborn or die soon after birth. Others may not be diagnosed until years later.
In Alberta alone, provincial figures show at least 170 cases of congenital syphilis and 35 deaths since the beginning of the outbreak in 2015.
Alberta and Manitoba together account for four in five confirmed cases of early congenital syphilis in Canada.
“To put it in perspective, the expected number of cases is zero,” says Ameeta Singh, a clinical professor in the Department of Medicine at the University of Alberta. “This is completely unacceptable to see in Canada.”
This is Alberta’s second syphilis resurgence since the early 2000s.
During the last outbreak, Professor Singh learned that every year, there were at least a hundred women delivering babies in Edmonton who received no prenatal care and likely missed crucial screening.
Not much has changed since then.
“It just seems to be on a different scale now,” says Singh. Then, as now, congenital syphilis was “really just the tip of the iceberg of a whole bunch of social problems that have come to a head,” says Singh.
Beyond the clinic walls
In theory, routine screening during pregnancy should identify all expecting parents with untreated syphilis. The earlier they receive treatment, the less likely the infection will pass to the baby.
However, some people may become infected after testing negative or receiving treatment early in pregnancy, and clinicians may not think to test them again unless they have obvious symptoms or report risks such as drug use or sex work.
In other cases, health services may lose track of patients before they receive test results or finish a course of treatment. Or a patient’s information may not follow them to the hospital when they deliver.
While some provinces have introduced universal retesting for syphilis later in pregnancy, curbing congenital syphilis requires reaching beyond the walls of clinics and hospitals.
In Edmonton, that has meant developing programs to connect women experiencing homelessness with prenatal care, as well as providing non-judgmental housing with embedded health and social services for those who might be rejected from other programs.
“We realized that people were not coming to us,” Singh says, “so how could we go to them?”
Rapid testing for syphilis also holds promise.
“We’ve had health care staff doing rapid testing over the last two years in a number of different settings as part of a study, and we picked up a ridiculous number of cases,” Singh says.
However, the research team had to get a special exemption to use the rapid tests because Health Canada hasn’t approved them yet.
Outreach services are important because prenatal care may not be accessible to people who live in precarious situations — whether that’s due to poverty, unstable housing, mental illness, addictions, abuse at home, the long-term effects of residential schools or other challenges.
Other expecting parents may be wary of seeking health care because of discrimination or fear that their baby will be taken away, say experts.
All of these barriers disproportionately affect Indigenous people — in Alberta, three in five babies with congenital syphilis are born to First Nations mothers.
Most provinces only recently stopped the longstanding practice of health workers covertly issuing “birth alerts” for parents they deemed unfit — a practice that led to hundreds of newborns being taken into foster care, sometimes shortly after birth.
Singh attributes the success of programs that offer testing and treatment outside of the usual health care settings to the involvement of community health representatives — mostly Indigenous women who work alongside nurses to provide a range of support services including health education and promotion.
In Nunavut, investments in community health representatives have been linked to lower rates of congenital syphilis despite an increase in infections among adults.
At the Call Auntie Clinic in Toronto, Indigenous midwives and other clinicians work alongside community birth workers.
Cheryllee Bourgeois, a Métis midwife with the Call Auntie Clinic and Seventh Generation Midwives Toronto , had never seen a baby born with syphilis until last year. Then she saw three.
She says many people think of syphilis as an “old-timey kind of illness” — a sexually transmitted souvenir of the distant past before penicillin became widely available as a treatment in the 1940s.
Formerly a registered midwife and now practising under an exemption for Indigenous midwives, Bourgeois aims to act as a bridge between her patients and the health care system.
She has seen patients in encampments, hospitals, and community facilities where they are comfortable – making sure that their records are available wherever they go.
Respect for a patient’s self-determination is key, Bourgeois explains.
Sometimes, respect means taking the long view in a relationship with a patient and setting aside short-term clinical goals.
“I had a first visit with a client who was 12 weeks pregnant when I chatted about their history and that’s it — no other clinical thing,” Bourgeois recounts. “But what that does is set me up for the next time to take her blood pressure.”
If a client doesn’t want to see an obstetrician, Bourgeois collects the information the specialist needs so the records are ready if the client ends up going to the hospital.
She also develops “warm referral pathways” with trusted specialists in different settings who she can vouch will treat her patients with respect.
“It’s a very different experience for somebody to walk into a hospital with records on file, even if they’ve never been seen there, as opposed to coming in with the perception that they haven’t received any prenatal care,” Bourgeois says.
The goal is to complement, not compete with, mainstream care, she adds.
“You need to have the large hospitals with the capability to do an ultrasound and take your blood all in one place. But that can’t be the only thing,” Bourgeois says. “You always need to ask yourself, ‘Who are we not seeing? And why are we not seeing them?’”
Professor Suzanne Shoush (PGME ’10), a First Nations/Black physician at the Call Auntie Clinic and the Indigenous Health Faculty Lead at Temerty Medicine’s Department of Family and Community Medicine, says that shifting more care to the community is a “huge piece of the solution” in improving access for people whose needs aren’t being met by mainstream services.
That includes shifting resources to value community expertise alongside clinical expertise.
“Those are the people who are trusted by the patients we serve, and it’s that trust that’s important — not necessarily a degree from a colonial institution,” says Shoush.
Health care funding is often distributed unevenly to certain parts of the system, Shoush notes. For example, most primary care funding goes to family doctors, yet most Indigenous people don’t have one.
Meanwhile, Shoush says, community collaboration requires humility, flexibility, and a willingness to think outside of the medical hierarchies that can be frustrating for clinicians.
“There’s truly a baseline level of exhaustion in medicine,” Shoush explains, which she says can make it difficult to deviate from the doctor-knows-best approach to care.
Ultimately, improving access is not about “figuring out how to get a patient to attend an appointment in a way that works for the health system,” she says.
“You conform to what works for them.”