The next time she returned to the ER she was on a stretcher, having suffered a stroke related to childbirth. It took her two years to recover, and then she had to search for a doctor who would help her safely deliver her third child.
Every year, 65,000 women have similar experiences when they almost die from pregnancy or childbirth. Hundreds more do die, and the fact that infants are being left motherless in the U.S. is drawing the attention of Congress.
"I do think that there is really a willingness on both sides to talk about this and deal with this," said Rep. Raja Krishnamoorthi, D-Ill. "It’s a question of making sure it gets the right priority. I’m trying to highlight it and move it up in people’s priorities so that perhaps we can deal with this sooner rather than later."
It isn't clear why the deaths are happening, but the numbers appear to be rising — a trend not observed in other developed countries — and many are linked to conditions involving bleeding or high blood pressure. Many occur several weeks after women leave the hospital. Because so many questions exist, bills that have been introduced focus on spurring better tracking and investigations of maternal deaths, as well as coming up with ways to prevent them.
The House Energy and Commerce health subcommittee is planning to hold a hearing on maternal mortality after it finishes work on a massive legislative package related to the opioid crisis, which leaders hope can pass the House by Memorial Day. Sen. Patty Murray, the top Democrat on the Health, Education, Labor and Pensions Committee, said she has been pressing for a maternal mortality prevention bill with 26 co-sponsors to be considered.
The Senate bill, the Maternal Health Accountability Act, would allow the federal government to support the creation of maternal mortality review committees in states, which study maternal deaths and make recommendations about how they can be prevented. The groups, which don't exist in every state, are made up of epidemiologists, ob-gyns, social workers, nurses, and patient advocates, and make suggestions that include encouraging treatment for diabetes, obesity, or substance abuse disorder. Some hospitals are addressing maternal mortality by keeping carts in their facilities that contain medication and tools prepared for when women begin showing signs of trouble during or after childbirth, an initiative that has saved lives.
“There is no reason the United States should be the only industrialized country where maternal deaths are on the rise," said Sen. Heidi Heitcamp, D-N.D., one of the bill's authors. "That’s unacceptable, and we need to get to the bottom of why that’s happening — and fast — and find solutions."
Sen. Shelley Moore Capito, the bill's Republican co-author, said the data on maternal deaths is "shocking and sad" and that she hoped more states would develop committees as a result of her bill.
"Maternal mortality review committees like the one in my home state of West Virginia help look at the problem locally, illustrate trends nationwide, and hopefully, will help reverse these statistics," she said in an email. "Unfortunately, 18 states still don’t have commissions.”
The Preventing Maternal Deaths Act is the House version of the Senate bill, and other legislation has been introduced in the lower chamber. The Ending Maternal Mortality Act would require federal health officials to develop a plan with the goal of cutting the rates of death in half over a decade, and the Mothers and Offspring Maternal Mortality Awareness Act, or MOMMA Act, would improve reporting, among a range of other measures.
Federal data suggests that the estimated maternal mortality rate in the U.S. increased by 26.6 percent from 2000 to 2014, even as pregnancies overall are falling. Health officials say that the rates of maternal death in the U.S. are the worst of any developed country. For instance, women in the U.S. are five times more likely to die from pregnancy or delivery than they are in England.
But it is difficult to know precisely to what extent rates are rising, as the numbers may be a reflection of better tracking. The World Health Organization also defines maternal deaths as occurring up to 42 days after birth, while the U.S. measures deaths up to a year. Still, more standardized information suggests the U.S. is behind.
"When there is data that is more comparable, it does appear that the U.S. mortality rate is higher than other developed countries," said Dr. Lisa Hollier, the president of the American College of Obstetricians and Gynecologists.
It is estimated that between 700 and 900 women die from pregnancy or childbirth-related causes, and that 60 percent are preventable.
"Right now our first real challenge is that we know the rates are climbing but we don't have quality, uniform data to help us make better informed decisions on next steps," said Rep. Robin Kelly, D-Ill., chairwoman of the Congressional Black Caucus' Health Braintrust and one of the authors of the MOMMA Act.
Racial disparities are apparent in the available data. Even though women of all backgrounds are at risk, black women are three to four times more likely than white women to die from pregnancy or childbirth. Black women have reported that their concerns about their health go unheeded, and research reveals that racism produces stress, leading to pregnancy complications and preterm births. Black women also are more likely to have illnesses such as diabetes or hypertension that make pregnancy more dangerous.
"The numbers weren't surprising to us, they are surprising to others who are just learning about it," said Elizabeth Dawes Gay, steering committee chairwoman of the Black Mamas Matter Alliance, which advocates on reproductive health issues. "What's more shocking is hearing from moms who have had recent experiences of utmost disrespect and borderline abuse from healthcare providers. When you hear what they experience trying to bring new life into the world it's horrifying that in 2018 women are experiencing that kind of care in the United States because they're black."
One provision in the MOMMA Act would help doctors receive training on how biases can affect medical care, and the disparities are being recognized by doctor groups. The Council on Patient Safety in Women's Healthcare, of which the American College of Obstetricians and Gynecologists is a member, has recommended that health facilities reduce disparities partly by helping staff understand the role implicit bias can play in healthcare.
Experts also suspect other contributing factors may be attributing to the mortality statistics, including the high rate of C-section births that can lead to more complications after leaving the hospital. Because half of U.S. pregnancies aren't planned, women who don't seek treatment for chronic health issues before becoming pregnant face more risks during pregnancy and following childbirth. Women are delaying pregnancy until they are older, and doctors often don't know how to recognize the early signs of life-threatening symptoms. Data from the American College of Obstetricians and Gynecologists also show that suicide and drug overdoses are playing a role.
"In different places I think it will be different things, but no one has put all that information together and compared it," said Rep. Jaime Herrera Beutler, R-Wash., who introduced the Preventing Maternal Deaths Act creating commissions, which has 122 co-sponsors.
Hollier agreed. "By understanding the state-level detail, your solutions can be individualized to a state," she said.
The MOMMA Act includes additional measures that include expanding the amount of time that new mothers could remain on Medicaid, a government-funded program that covers half of births in the U.S. The bill would extend coverage from 60 days to a year. The legislation also encourages healthcare facilities to develop better protocols when women need emergency obstetric care. Kelly has said she hopes her bill can go "hand in hand" with other proposals.
Herrera Beutler said she welcomed more interest in the issue but expressed some concerns over whether more wide-sweeping legislation might get tangled in similar healthcare debates that often play out on Capitol Hill.
"I certainly didn’t want to drag the whole healthcare debate into this because I want to see this pass soon," she said of the Preventing Maternal Deaths Act. "I want to see it pass this summer."
For Krishnamoorthi, who sponsored the Ending Maternal Morality Act setting a 10-year plan to reduce deaths, his concern is that few bills tend to advance during an election year, despite the growing support for action. The bill has 19 co-sponsors, led by Herrera Beutler.
“We should be able to deal with this," Krishnamoorthi said. "And we can if we can just put some focus on it. If we do we will reduce maternal mortality significantly. I’m convinced of it.”