Looking back, Jo Ann Allen wonders what she might have missed in the days leading up to her niece's sudden death.
Monique Bacon was 17 and had given birth just weeks before to a son. Allen, who is a nurse and knows the importance of keeping a mom healthy, took Bacon to her prenatal appointments. She said Bacon seemed fine – energetic and healthy.
So no one expected what happened at a Chatham gas station in 1991. Bacon collapsed. Allen, summoned by a phone call from a relative, arrived to see paramedics trying to resuscitate her. Her thoughts flashed to Bacon's son.
"It was devastating," she recalled of her niece's death, which was due to a heart-related issue. "She left a newborn."
The Centers for Disease Control and Prevention estimates that every year, 700 women in the United States die within one year of giving birth as a result of related complications. As other countries' rates of maternal death decline, the United States is experiencing an alarming rise in maternal mortality – nearly four times worse than Canada, and five times worse than Australia. The nation's numbers are more on par with Libya and Bahrain.
In the last decade, more than 650 women died in Illinois of pregnancy-associated deaths, defined as death from any cause within one year of pregnancy. In 2016, according to the most recent data available from the Health Department, Illinois had more than 150,000 births and 73 pregnancy-associated deaths. African-American women are three to four times more likely to die from causes related to pregnancy, according to the CDC.
To reverse this trend, Illinois Rep. Robin Kelly, D-Matteson, who is co-chair of the Congressional Caucus on Black Women and Girls, introduced the Mothers and Offspring Mortality and Morbidity Awareness Act in May. Known as the MOMMA Act, it would expand Medicaid coverage, establish emergency obstetric protocols, encourage training and create federal collection of data. Not all states review maternal deaths, and those that do review cases in different ways. Kelly hopes to hold hearings in September. In the meantime, Sen. Dick Durbin is working on a companion bill he hopes to introduce this month.
"Having a baby in 2018, you shouldn't lose your life from that," Kelly said. "People that want to be mamas should have that opportunity to be a mama."
Health experts say too many women are dying of preventable causes after giving birth. A February CDC review of nine states including Illinois concluded that of the 680 women who died during pregnancy or within one year of delivery, about 60 percent of their deaths could have been prevented. Nearly half of the deaths were due to hemorrhage, heart issues or infections.
To better understand the days and weeks leading up to the death of a new mother, the state's Maternal Mortality Review Committee has been meeting since last spring to work its way through hourslong conversations of individual cases of women who died in 2015.
Shannon Lightner, deputy director of the Health Department's Office of Women's Health and Family Services, said it zeroed in on data from 2015 when it noticed the number of deaths in Illinois increased from 65 in 2014 to 93 in 2015.
"Looking at it, we were like, we need to dive into that," she said.
So far, the committee, which includes doctors, nurses and social workers, has reviewed nearly all of those deaths to determine if they were related to pregnancy. To ensure they are including as many women as possible, a staffer scours obituaries, news stories and even online fundraisers to find word of Illinois women who left young children behind.
A separate committee reviewed 28 different cases associated with violence – homicide, suicide, drug overdose – that could be considered related to pregnancy. In October, after concluding how many deaths were connected to pregnancy, committee members will meet and finalize recommendations they hope to release this fall.
"One of the things that's most important is educating moms about things that can kill them," said Paloma Toledo, a committee member who is an obstetric anesthesiologist at Northwestern Medicine's Prentice Women's Hospital.
By sifting through women's medical records, pharmacy prescriptions, police data and even what their families tell emergency room personnel – she had complained of a headache, she was foaming at the mouth – they hope to identify potentially preventable deaths and save lives.
"We will never have the complete picture," Lightner said. And she acknowledges the death data pales in comparison to how many women experience, and survive, severe complications. For every woman who dies, they estimate 100 experience a case of extreme maternal morbidity, which the committee defines as an unplanned admission to intensive care and a transfusion of four or more units of blood. All perinatal centers in Illinois are now analyzing these cases. Lightner said Illinois is the first state to undertake such a review.
By focusing on women who died after they were pregnant – a time where, ideally, they are monitored the most in their lives – she hopes to extrapolate factors that can improve women's health overall. "We're trying to understand, and we're trying to use that for good."
Of the 73 deaths in Illinois in 2016, 42 women died between 43 days and one year after delivery. This points to the importance of monitoring mothers not just in the hospital, but weeks and even months after they leave, said Dr. Nicole Williams, founder of the Gynecology Institute of Chicago.
"We need to be a lot more vigilant with our moms," Williams said. "We incorrectly assume just because everything went well with the birth that there will be no complications postpartum. This is where we drop the ball."
Angela Ellison was 9 when her mother gave birth to her younger sister. A month later, Ellison was sitting in a beauty shop when she saw her father and aunt crossing the street toward her, crying. "They came and told me that my mother had just died."
Ellison, senior director of the University of Illinois at Chicago's Office of Community Engagement and Neighborhood Health Partnerships, said a blood clot caused her mother's death.
Her loss inspired her to talk to women about self-care. At a July event at Sinai Health System's Community Institute, she gave a presentation that addressed health disparities and how black women were more likely to die after childbirth. She asked an audience of pregnant women and mothers how many of them had taken their baby to the doctor. Many raised their hands. Then she asked, how many of them had gone to their own doctor's appointments. Many hands fell.
"I'm hoping they'll think about it," she said. "That's all I want."
In April, the American College of Obstetricians and Gynecologists recommended a "fourth trimester" of care, beginning within three weeks of giving birth. The Black Mamas Matter Alliance has urged an improved response to obstetric emergencies, ensuring women understand warning signs for complications and requiring providers to have bias training.
"It's not easy to pinpoint to one thing," Lightner said. "There's so many other things going on that interplay in a black woman's life. If black women are more likely to be in poverty, if black women are more likely to be on Medicaid, if black women are more likely to have transportation barriers ... all of those things are going to be playing a role."
Recently, Durbin sent Gov. Bruce Rauner a letter requesting information on state efforts to address deaths of new mothers. The letter, signed by several legislators, said pregnant and postpartum African-American women are too often ignored or not taken seriously when they seek medical treatment.
Kandace Thomas, a senior program officer with the Irving Harris Foundation where she focuses on infant and reproductive health, said racism is one of the major causes of disparity in care. At a downtown event in June addressing maternal mortality, women talked about the stress that racism can have on the body and how their pain might not be taken seriously.
"No matter how much education we have, no matter how much money we have, we are still three to four times more likely to die," Thomas said at the event held by EverThrive Illinois, which works to improve the health of women and families.
In its report, the CDC reported both patient and provider factors contribute to deaths. Williams said the medical community needs to focus on monitoring mothers as much as they do infants.
"We are very good at keeping babies alive, but we don't think as much about moms. 'Oh she's healthy, she just had a baby, she should be fine,' " she said. "After a woman has a baby, that's probably her most vulnerable time."
One way to reach moms is to visit them.
A pilot program in Peoria and Stephenson counties offers free home visits for every new mom. At Presence Resurrection Medical Center, a postpartum nurse visits all new mothers and babies at no cost within 96 hours of discharge. Stroger Hospital is beginning a home-visiting program as well.
Hospitals also are zeroing in on specific complications.
At Northwestern Medicine's Central DuPage Hospital, patients are sent home with information on signs and symptoms of eclampsia, and those discharged with blood pressure medication are told to follow up within three days. Because blood pressure can spike days after discharge with risks ranging from headaches to seizures or death, a year and a half ago Advocate Lutheran General Hospital in Park Ridge began a screening program to identify women at risk.
But across the state, there are no standardized guidelines for how to follow up with new moms or warn them on what symptoms warrant a call to their doctor.
Bacon's son, Timothy Williams, said he has reflected a lot during his 27 years about the impact of his mother's death.
"Even though I was only a month old, I still felt that," he said. "Even though I'd only known her a month, we had established a connection even before I was brought here physically."
As a child, he watched with envy as other boys played with their moms. As a teenager, he wondered if he would've been bounced around relatives' homes less if his mom were around. As an adult in his early 20s, he felt chest pains that made him feel suddenly, significantly connected with the way she had died.
"It was painful, growing up. I didn't realize that a child could have so much pain and hurt even though they didn't know their parents," Williams said. He is pursuing a master's degree in mental health counseling at Adler University, hoping to help others heal. "What I went through prepped me for not even just the things that I faced, but to be that shining light for others. A testimony, if you will."
Allen has spent the decades since her niece died working with new moms and babies as a lactation consultant and instructor at the University of Illinois at Chicago's College of Nursing, where she teaches how to identify postpartum complications.
"The same problems that existed when I started 40 years ago are the same problems that we're seeing now," she said.
When she speaks to new parents, she emphasizes that the family should pay attention to the mother's health – and not just the next day but weeks and months later. She emphasizes warning signs. Headaches. Dizziness. Nausea. Pain that medication doesn't help.
"I look to them to shake their head and say 'OK,' so I know they're hearing me," she said. "So many times the mothers forget about themselves because they're so worried about taking care of their baby."