Still, Ms. Odunuga visited her grandson every day for three months, driving to the NICU from her job at the University of Houston. “I’d put him in my shirt to keep him warm and hold him there.” She fell in love. She named him Emmanuel.
Once Emmanuel was discharged, Ms. Odunuga realized she had no choice but to quit her job. While Medicaid covered the costs of Emmanuel’s treatment, it was on her to care for him. From infancy, Emmanuel’s life has been a whirlwind of constant therapy. Today, at 20 months old, Odunuga brings him to physical, occupational, speech, and developmental therapy, each a different appointment on a different day of the week.
Emmanuel has thrived beyond what his doctors predicted, toddling so fast that Ms. Odunuga can’t look away for a minute and beaming as he waves his favorite toy phone. Yet he still suffers from gagging issues, which means Ms. Odunuga can’t feed him any solid foods. Liquid gets into his lungs when he aspirates; it has led to pneumonia three times. Emmanuel has a special stroller that helps keep his head in a position that won’t aggravate his persistent reflux, but Odunuga said she still has to pull over on the side of the road sometimes when she hears him projectile vomiting from the backseat.
The days are endless. Once she puts Emmanuel to bed, Ms. Odunuga starts planning the next day’s appointments. “I’ve had to cry alone, scream out alone,” she said. “Sometimes I wake up and think, Is this real? And then I hear him in the next room.”
Putting aside the challenge of eliminating syphilis entirely, everyone agrees it’s both doable and necessary to prevent newborn cases. “There was a crisis in perinatal HIV almost 30 years ago and people stood up and said this is not OK — it’s not acceptable for babies to be born in that condition. ... [We] brought it down from 1,700 babies born each year with perinatal HIV to less than 40 per year today,” said Virginia Bowen, an epidemiologist at the CDC. “Now here we are with a slightly different condition. We can also stand up and say, ‘This is not acceptable.’” Belarus, Bermuda, Cuba, Malaysia, Thailand, and Sri Lanka are among countries recognized by the World Health Organization for eliminating congenital syphilis.
Success starts with filling gaps across the health care system.
For almost a century, public health experts have advocated for testing pregnant patients more than once for syphilis in order to catch the infection. But policies nationwide still don’t reflect this best practice. Six states have no prenatal screening requirement at all. Even in states that require three tests, public health officials say that many physicians aren’t aware of the requirements. Dr. Stafford, the maternal-fetal medicine specialist in Houston, says she’s tired of hearing her own peers in medicine tell her, “Oh, syphilis is a problem?”
It costs public health departments less than 25 cents a dose to buy penicillin, but for a private practice, it’s more than $1,000, according to Dr. Park of the University of California San Francisco. “There’s no incentive for a private physician to stock a dose that could expire before it’s used, so they often don’t have it. So a woman comes in, they say, ‘We’ll send you to the emergency department or health department to get it,’ then [the patients] don’t show up.”
A vaccine would be invaluable for preventing spread among people at high risk for reinfection. But there is none. Scientists only recently figured out how to grow the bacteria in the lab, prompting grants from the National Institutes of Health to fund research into a vaccine. Dr. Justin Radolf, a researcher at the University of Connecticut School of Medicine, said he hopes his team will have a vaccine candidate by the end of its five-year grant. But it’ll likely take years more to find a manufacturer and run human trials.
Public health agencies also need to recognize that many of the hurdles to getting pregnant people treated involve access to care, economic stability, safe housing and transportation. In Fresno, Ms. Adams has been working on ways her department can collaborate with mental health services. Recently, one of her disease intervention specialists managed to get a pregnant woman treated with penicillin shots and, at the patient’s request, connected her with an addiction treatment center.
Gaining a patient’s cooperation means seeing them as complex humans instead of just a case to solve. “There may be past traumas with the health care system,” said Cynthia Deverson, project manager of the Houston Fetal Infant Morbidity Review. “There’s the fear of being discovered if she’s doing something illegal to survive. ... She may need to be in a certain place at a certain time so she can get something to eat, or maybe it’s the only time of the day that’s safe for her to sleep. They’re not going to tell you that. Yes, they understand there’s a problem, but it’s not an immediate threat, maybe they don’t feel bad yet, so obviously this is not urgent. ...
“What helps to gain trust is consistency,” she said. “Literally, it’s seeing that [disease specialist] constantly, daily. ... The woman can see that you’re not going to harm her, you’re saying, ‘I’m here at this time if you need me.’”
Ms. Yang stood outside the clinic, waiting for Angelica to show up, baking in the 90-degree heat. Her feelings ranged from irritation — Why didn’t she just go? I’d have more energy for other cases — to an appreciation for the parts of Angelica’s story that she didn’t know — She’s in survival mode. I need to be more patient.
Fifteen minutes ticked by, then 20.
“OK,” Ms. Yang announced. “We’re going back.”
She asked Sevilla if he would be OK if they drove Angelica to the clinic; they technically weren’t supposed to because of coronavirus precautions, but Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. Sevilla gave her the thumbs up.
When they pulled up, they saw Angelica sitting in the backyard, chatting with a friend. She now wore a fresh T-shirt and had shoes on her feet. Angelica sat silently in the back seat as Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.
Finally, Ms. Yang thought. We got her here.
The clinic was packed with people waiting for COVID-19 tests and vaccinations. A worker there had previously told Ms. Yang that a walk-in would be fine, but a receptionist now said they were too busy to treat Angelica. She would have to return.
Ms. Yang felt a surge of frustration, sensing that her hard-fought opportunity was slipping away. She tried to talk to the nurse supervisor, but he wasn’t available. She tried to leave the gift cards at the office to reward Angelica if she came, but the receptionist said she couldn’t hold them. While Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.
Finally, Ms. Yang accepted this was yet another thing she couldn’t control.
She drove Angelica back to the yellow house. As they arrived, she tried once more to impress on her just how important it was to get treated, asking Mr. Sevilla to interpret. “We don’t want it to get any more serious, because she can go blind, she could go deaf, she could lose her baby.”
Angelica already had the door halfway open.
“So on a scale from one to 10, how important is this to get treated?” Ms. Yang asked.
“Ten,” Angelica said. Ms. Yang reminded her of the appointment that afternoon. Then Angelica stepped out and returned to the dusty yard.
Ms. Yang lingered for a moment, watching Angelica go. Then she turned the car back onto the highway and set off toward Fresno, knowing, already, that she’d be back.
Postscript: A reporter visited Huron twice more in the months that followed, including once independently to try to interview Angelica, but she wasn’t in town. Ms. Yang has visited Huron twice more as well — six times in total thus far. In October, a couple of men at the yellow house said Angelica was still in town, still pregnant. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.
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