Venus Johnson entered the world clinging to life. She stopped breathing shortly after delivery, and doctors massaged her tiny chest and held her upside down to clear her lungs of thick mucus, the result of an infection she caught in the womb: congenital syphilis.
“She’s a fighter. That’s what saved her, I think,” said her grandmother, Danae Johnson.
Venus was whisked off to the neonatal intensive care unit, where she was intubated and treated with round-the-clock infusions of an intravenous antibiotic for the next 10 days.
“There wasn’t a lot of holding her or touching her,” Johnson said.
Now a feisty, taco-loving 18-month-old, Venus has recovered from the initial infection, but doctors told her grandmother that she would probably have lifelong consequences from it. She has signs of a latent infection and must be checked once a year to make sure it hasn’t returned.
Left untreated, syphilis can lead to stillbirth. It may damage a baby’s organs and bones or harm vision and hearing. In 2021, more than 200 infants in the US with congenital syphilis died.
Venus’ case is part of an unsettling trend: Rates of syphilis in babies are rising at an alarming rate in the United States.
Syphilis is a bacterial infection that is typically spread by sexual contact. It begins with a painless sore called a chancre. These often arise on the genitals or mouth. The disease spreads from person to person through direct contact with these sores.
People can have symptoms 10 to 90 days after infection. Syphilis is sometimes called the great pretender because its symptoms can mimic those of many other diseases: fever, sore throat, swollen lymph nodes, hair loss and fatigue.
Without treatment, the infection progresses through a series of stages. It can lie dormant in the body for years or even decades, returning with a vengeance in its later stages to attack the brain, nerves, eyes and other organs. It can lead to deafness, blindness or death.
In addition to passing the infection through skin sores, people who are pregnant can pass the infection to a developing baby in the womb. When a baby becomes infected before birth, this is known as congenital syphilis.
Public health experts consider congenital syphilis to be a “never event” – something that should never happen – because nearly every case is preventable.
Timely treatment – at least 30 days before delivery – slashes the risk that the infection will pass from mother to baby by 98%, and syphilis is treated with penicillin, one of the world’s oldest and cheapest antibiotics. From a public health standpoint, then, stopping this infection should be almost a no-brainer.
But increasingly, people are falling through the cracks during pregnancy, not getting tested or treated in time to stop transmission from mother to infant.
Each case represents “multiple failures of the health system to identify and treat the mom,” said Dr. Ali Khan, dean of the College of Public Health at the University of Nebraska Medical Center.
Over the past decade, “there’s been about a 700% increase in the cases of congenital syphilis in the United States,” said Dr. Robert McDonald of the US Centers for Disease Control and Prevention’s Division of STD Prevention, Surveillance and Data Management.
“It really is upsetting, because this is something that is fully preventable if we have the right screening and treatment,” he said. “It’s out there; people just need to be connected with that.”
Rates of congenital syphilis, meaning the number of cases for every 100,000 live births, are highest in the South and Southwest, in states such as Arizona, New Mexico, Louisiana, Mississippi and Texas, according to a CNN analysis of CDC data.
Cases in the South have grown the fastest: up 432% between 2016 and 2021, which is the latest year for which complete data is available.
Individual states have seen increases that are even more eye-popping. From 2016 to 2021, cases shot up 3,300% in Mississippi, nearly 3,000% in Oklahoma, more than 2,200% in Hawaii, more than 1,800% in Washington, more than 1,600% in New Mexico, more than 1,500% in Wisconsin and more than 1,000% in Iowa and Arizona, according to CDC data.
Even Maine, which had been one of three states to have been free of cases in the past decade or so, reported its first congenital syphilis case in three decades in January.
This is a frustrating reversal for the US, where determined public health efforts and robust contact-tracing programs had driven congenital syphilis cases to almost historically low numbers just a decade ago.
In 2012, 324 congenital syphilis cases were reported to the CDC. In 2021, that number had ballooned to 2,677.
The reasons for this increase are complex and intertwined, starting with a lack of funding.
At the height of the success of efforts to eradicate congenital syphilis, the government followed what has become a predictable approach when it comes to funding public health.
“When something no longer seems to be a problem, we walk away from it,” said Elizabeth Finley, communications director for the nonprofit National Coalition of STD Directors.
According to an analysis by the coalition, CDC prevention funding for the prevention of sexually transmitted diseases has fallen more than 40% since 2003, when adjusted for inflation.
Next, there’s a shortage of qualified personnel.
During the Covid-19 pandemic, STD programs were sacrificed in many health departments so their resources – particularly staffers with much-needed contact tracing experience – could be diverted to fighting the coronavirus.
One of the main roles of public health programs is messaging, getting the word out. Without staff and resources, awareness has been lacking.
Cases of congenital syphilis had become so rare that many doctors no longer recognize the infection.
“For many doctors who may have been training in the 1990s or early 2000s, they may not have seen syphilis,” McDonald said. “They may not have learned that much about syphilis because it was on such a decline in the country.”
Then there’s the role of Medicaid, which covers almost half of all births in the United States.
Rates of syphilis are six times higher among Medicaid participants compared with people covered by private insurance and twice as high compared with those who pay their own health care costs, according to a recent study by the CDC.
Although Medicaid requires that all pregnant women be tested for syphilis in their first trimester, state policies differ on repeat testing, in the third trimester of pregnancy and at birth.
Even in states that have not expanded eligibility for Medicaid, lower-income pregnant women are usually covered for prenatal care and for at least two months after they give birth. But their male partners may not be. States that haven’t expanded Medicaid don’t cover childless adults who are not disabled, which may make it difficult for men to get primary care. So even if women are diagnosed and treated, their sex partners may not be, increasing the potential for reinfection during pregnancy.
Of 11 states that haven’t expanded eligibility for Medicaid, seven are in the South, the region that has also seen the biggest increases in congenital syphilis in recent years.
The demographics of the infection have shifted, too. Once, syphilis was most common among men who have sex with men, but recently, the infection has become more common in heterosexual women and their partners.
It seems to be especially common in certain settings: for example, in situations where substance abuse and transactional sex may be involved. Women addicted to methamphetamine seem to be at particular risk.
“We have noticed this in our practice, as well,” said Dr. Deepika Sankaran, a neonatologist and assistant professor at the University of California at Davis who co-authored a recent review on the increase. “Substance abuse, especially methamphetamine abuse and perinatal syphilis or syphilis in moms, goes hand-in-hand.”
That means many women who are at risk of getting syphilis and passing it on to their babies are in vulnerable situations and difficult for health care providers to reach.
Venus’ mother is Johnson’s daughter. She is unhoused, and Johnson found her on the street in 2021 in the early stages of pregnancy. Johnson took her to a local emergency room for care.
“They just brushed her off,” Johnson said. She was diagnosed and treated only shortly before Venus was born.
This story is not unfamiliar to Sankaran, who noticed the same thing at the health care center where she works. Many times, she says, pregnant women at high risk for syphilis would come to the ER for care, but doctors there wouldn’t think to check for the disease, which doesn’t always have obvious symptoms.
“A lot of times, these pregnant moms who may potentially have syphilis, that is the only point of contact. That is our only time we can actually diagnose them, test them and treat them,” she said.
Sankaran says she talked to colleagues in the ER and set up what amounts to a mini syphilis clinic in emergency department of Rideout Regional Medical Center, the community health center where she works in Marysville, California.
Now, she says, every pregnant woman who shows up in the emergency department gets a blood test to screen for syphilis. If it’s positive, they get a shot of penicillin before they leave.
“This injection with penicillin is very effective in treating perinatal syphilis and could be helpful in preventing congenital syphilis in the newborn,” she said.
New Mexico, which has the second-highest rate of congenital syphilis in the US behind Arizona, has taken a similar approach. The state recently renewed a public health order issued in 2021 that deems all women in the state at high risk of syphilis infection. The order requires doctors to follow best practices outlined by the CDC, which include testing all pregnant women for syphilis three times: once in the first trimester of pregnancy, again in the third trimester and finally at delivery. It also requires doctors to test pregnant women seen in emergency rooms and urgent care centers.
Johnson, who has legal custody of Venus, wishes someone had listened to her concerns for her daughter. She worries what congenital syphilis could mean for Venus’ health long-term.
Between the time off for the baby’s birth and the weeks they recently spent back in the hospital after a viral infection caused breathing issues, Johnson says, she missed so much work that she got fired.
She set up a GoFundMe page to help with their hefty medical bills. Now she hopes their story can help raise awareness about the risks of syphilis to mothers and infants.
“If they would have listened at all, they could have caught it early,” Johnson said.