Havilah Uloma doesn't have any pictures of her son, Kamsi.
"I had to destroy the pictures," she says.
Uloma – who lives in Rivers State, Nigeria, and works in a brothel – says it's too painful to remember her son, who died in November. He was 1 year old.
"I didn't go to the hospital. There was no money," says Uloma, who is 40 and doesn't have any other children. "I was buying roadside [medications] to give him. That was when he gave up. He left. He died."
She doesn't know exactly what killed her son; she thinks it might have been an infection or maybe the roadside medications were counterfeit. What Uloma does know is that as painful as her experience is, it is "common," she says. Many of her fellow sex workers have lost children.
While countries routinely collect child mortality data, very little is known about the lives — and premature deaths — of sex workers' children. Sometimes there are no records of these kids' births or deaths.
"They could be born in a brothel and their birth is not registered. So for many of these children, on paper, they may not exist," says Dr. Wendy Macias-Konstantopoulos, an associate professor at Harvard Medical School and a specialist in health equity.
Researchers have also ignored this population. "Although there are studies on HIV among female sex workers, these children are not making the radar," she says.
Now there are efforts to shed light: Astudy published in March provides some of the first figures on the possible causes of death for these youngsters. In addition, a program for pregnant sex workers and their children at a small Nigerian hospital has revealed dire health problems. This push is spearheaded by the nonprofit Global Health Promise, which is based in Oregon and works in nine countries, focusing on the health of mothers who are sex workers and their children.
"The issues are overwhelming. I think I'd actually call it a state of emergency," says Dr. Patrick Ezie, medical director of Silver Cross Hospital in Abuja, Nigeria, which houses the new program for pregnant sex workers and their children. "It is shocking — and we don't get shocked easily."
'These babies are born struggling'
Ezie has been a doctor in Nigeria for 15 years. In that time, he's seen a lot of suffering, he says. But still, he was taken aback by the severity of the health problems he saw when his hospital began the program for pregnant sex workers in November 2023.
For starters, he says, many of the sex workers he's met have received no prenatal care. He cites both financial constraints and logistical constraints, since many work at night and sleep during the day. The lack of prenatal care is a particular problem for the mothers who learn at the time of delivery that they are HIV positive or have syphilis, he says. Without preventive medication during pregnancy, it is hard to avoid transmission to the baby.
For those women who are brought into the program early enough for prenatal care, Ezie's clinical staff have noticed a number of issues. He says the women often don't have enough food during pregnancy and many face harsh situations. "They have to work even though they're pregnant and the male partner that they meet every night may not be gentle," he explains.
Ezie's found that when sex workers deliver their babies, the newborns are more likely to be born small, weak or in need of resuscitation.
"These babies are born struggling," he says, adding that their struggle often continues into childhood. Many infants are weaned off breast milk and given solid foods far too young, sometimes at just one month old, because their mothers have to work. Not only do those kids lose the protective benefits of breast milk but they could be at risk of choking. A too-early diet of solids is also associated with long-term health complications such as obesity and diabetes.
And Ezie sees children with stunted growth. For example, many of the 5-year-olds who come to his hospital's program are the size of an average 3-year-old because they're malnourished.
Ezie's program currently serves about 40 sex workers and their families. Global Health Promise also supports maternal and child health programs for sex workers in five other Nigerian cities as well as in Uganda and Kenya.
"What we're doing is very insignificant compared to the volume of the women who are out there who are doing sex work and need help," Ezie says.
'Let me give this child this drug'
Brian Willis – who is the founder and director of Global Health Promise – argues that there's not more help because the population is often invisible. The lack of information, he says, means there are "no policies, no funding, no awareness." He's trying to change that.
In 2019, the researchers for the study interviewed sex workers in Angola, Brazil, the Democratic Republic of the Congo, India, Indonesia, Kenya, Nigeria and South Africa. They gathered detailed information on the deaths of nearly 600 children of sex workers. The findings were published in March in The Journal of Global Health, a peer-reviewed journal.
The study used an approach called "community knowledge" – interviewing sex workers about the children of fellow sex workers who had died.
In research circles, this methodology is employed in hard to reach populations and when it is challenging to get information directly from the source. Willis says his team found that mothers are sometimes reluctant to talk about their own child's death, likely because it's emotionally hard and shameful or because parents fear consequences if neglect is involved.
"Most of us would know if the child of a friend died or a neighbor died. And they do too. It is no different than that," says Willis, who explains that the researchers combed the data to ensure duplicate deaths were removed.
"What we found was that there are a large number of deaths among the children of female sex workers across these countries," says Macias-Konstantopoulos, of Harvard Medical School, who is the lead author of the study and an adviser to Global Health Promise.
The researchers got as many details as they could about why each child might have died and found that malnutrition was common as were accidents – like house fires – and communicable diseases – like malaria and HIV. Another cause of death frequently cited by the mothers was a reaction to medication.
This doesn't surprise Uloma, the sex worker from Nigeria whose 1-year-old son died.
She says one of her fellow sex workers, who had to work at night and didn't have anyone to watch her 2-year-old daughter, gave her child Tramadol, a strong pain killer known to make people drowsy. The goal was for the toddler to sleep through the night.
"She was like: 'Let me give this child this drug. She will sleep. Nobody will know I am not around,' " recounts Uloma. "But unfortunately to her, before she came back, the child died."
Outside experts have praised the research for beginning to fill a major gap in information. "It's commendable that they were able to engage in this work and collect this data so that we even have a starting point," says Jennifer Seager, an associate professor in the department of global health at George Washington University.
However, people in the field say there are many unanswered questions about the study. Seager wondered why the study was not able to draw conclusions about how much more or less likely it is for sex workers' children to die compared to children in a similar economic setting. The researchers say they looked at just a small subset of the population of sex workers and nobody knows the total numbers.
Seager also wonders whether there are different rates and causes of child mortality among sex workers who work on the street compared to those in a brothel or those who do sex work as a second job.
For her part, Uloma is eager to see action to improve the situation. And she has an idea of what might help: "The community, the society need more awareness," she says. "Most times people don't really know that sex workers, they even have children."
One thing she does is try to let people in her community know that sex workers have children – and those children "have their own lives to live."
Copyright 2024 NPR