It’s taken years for her to say it, but Nicolle Gonzales now can frankly state that she nearly died in childbirth. The arrival of her first child was marked with warning signs—a big baby, a long labor, high blood pressure. She hemorrhaged; her husband remembers so much blood, and her mother was so traumatized she didn’t attend the births of Gonzales’ next two children. Yet the doctor barely spoke to her, barely acknowledged her questions or concerns through the process.
It took years, and, in part, her master's degree, to understand how near a miss that was.
Gonzales, a San Ildefonso Pueblo Diné woman and midwife, is on the frontlines of a new battle for mothers.
The statistics she’s staring down put gaping holes in families without matriarchs. Nationwide, the maternal death rate has climbed, and women of color are particularly hard-hit. A woman is more likely to die during childbirth in America than in Iran, Serbia, or Bosnia-Herzegovina. This, in the nation that spends more on healthcare than any other.
What happens at birth, Gonzales says, has a chance to reshape everything else that follows, starting a process that mends ties to family and community. To offer women that support and an option to birth in a traditional way, she's in the throes of establishing a Native birthing center.
Sen. Nancy Rodriguez thought she would also be leading a charge to shine more light on the state's lost mothers this year, but her efforts ended on the governor's desk—at least for now. When the long-serving Santa Fe lawmaker spoke at a New Mexico Federation of Democratic Women event at the start of the regular session, she mentioned a bill she drafted after hearing a case made solely through the numbers. Since the turn of the 21st century, the rate at which women die in childbirth across the country has doubled.
When she finished speaking, a woman from the front row of the audience approached, and pleaded with her to pursue the legislation. She'd lost a family member shortly after the woman had given birth, and said, as the senator recalls, "to this day, we are just wondering what happened. We don't have her in the family any more—we have the baby, and not her, and no idea what happened. So hopefully something like this legislation will help come up with some answers."
The latest numbers show a rate of 19.1 maternal deaths per 100,000 live births in New Mexico each year, up from 9.6—the state aggregates four years of data at a time, so these rates apply respectively to 2012-15 and 2003-06. Nationwide, over the 20th century, maternal mortality had severely declined, from a rate as high as 850 or 900 per 100,000 births in the early 1900s, to one as low as 10.
Unraveling how and why these numbers have been climbing is a challenge fettered by privacy laws protecting an individual's health care and fogged by a recent change in death certificate filings. That administrative change, which began rolling out in 2003, may be responsible for increasing the number reported, creating the appearance of an increase simply by virtue of catching more of these deaths.
"We probably were not doing a good job of tracking in the '90s," says Dr. William Callaghan, chief of the Maternal and Infant Health Branch at the federal Centers for Disease Control and Prevention.
In last five years, since death certificates began including a box to check if a woman was or had recently been pregnant when she died, the national rate has hovered around 16 or 18 per 100,000.
"To what degree that was a real increase up to that 16 or 18, and to what it's just identification, I can't really tease out," he tells SFR. There's room to quibble about measuring issues, he says, yet "at the end of the day, we feel really confident that it is what it is today and it's too high. … There really is no acceptable level."
With his first grandchild due this summer, this issue weighs on his own mind for more than theoretical reasons.
The legislation from Rodriguez sought to loosen some of the stranglehold on this information in New Mexico and create a 25-person, zero-cost committee to study these cases. In her veto message, the governor wrote that while she was sympathetic to the cause, there wasn't any need to legislate the creation of such a committee.
Physicians disagree. One hurdle to good data is that hospitals are reluctant to hand over case information. Maternal mortalities often result in lawsuits, and no one wants to risk a violation of the federal privacy law called the Health Insurance Portability and Accountability Act (HIPAA). The numbers are small enough that details such as when, at which hospital, and what caused a woman's death are seen as identifiable and therefore cannot be released to the public. The proposed legislation would have authorized hospitals to give those details to two designated aggregators, who could then review and present data to the committee without any recognizable details. The committee could then assess their causes and make recommendations as needed.
The legislation would also have allowed for expanding the process to include severe morbidity events, cases considered a "near miss" with death, such as what midwife Gonzales experienced. These cases are by some estimates 20 times more common than death and also, according to the CDC, appear to be on the rise.
The impetus for the legislation came from Dr. Sharon Phelan, chairman of the American College of Obstetricians and Gynecologists, professor at the University of New Mexico and a physician in the state for 40 years, 30 of which have seen her reviewing maternal deaths. When she testified in February to a Senate committee, she pointed out that women die during childbirth in the United States at a rate that ranks among what's found in developing nations.
In New Mexico, she says, "It's small in number—20 people a year when some 200 die in motor vehicle accidents, but you've lost a mother, a daughter, a sister. It's a big blow to the family. A maternal death is just the tip of the iceberg. And for every one of them, there are probably 20 to 40 severe morbidity events that will have consequences for that woman and her family for years to come."
Exactly how small that number is depends on which agency you ask. The Department of Health, which counts just women who died within six weeks of the end of a pregnancy, lists just 34 maternal mortalities between 2008 and 2014. Extend that research out as far as a year after giving birth, as Phelan does in her maternal mortality reviews, and the number climbs to 135.
"The problem we have in New Mexico is that we don't have any real good data gathering," says Dr. Abraham Lichtmacher, chief of women's services at Lovelace Health System. "There are racial disparities in those numbers, but because we don't have any great way of collecting that data or a mandatory reporting requirement, we're catching these things at the back end."
He cites estimates that some 30 to 40 percent of maternal deaths still are not captured by the mechanisms currently used.
Phelan and advocates were able to use death certificate data to craft a breakdown by cause of death, region and race to give legislators. These numbers are "just a start," Phelan cautions, and not a complete picture of the problem. Their survey expanded to include women who died within a year of giving birth as a way of tracking how many families are disrupted by this type of loss. The rough summary shows that women of color bear a disproportionate burden. White non-Hispanic women die at a rate of roughly 14.9 per 100,000, while Hispanic women at 25.5—well ahead of the national average of 11.3—and Native American women at 23.7.
Those numbers fit with national trends found in a September 2016 study published by the American College of Obstetricians and Gynecologists. Their analysis found that the nationwide rate increased 26.6 percent between 2000 and 2014, disproportionately affecting women of color. Black women are three to four times more likely to die during childbirth than white women, and Hispanic women 50 percent more likely.
When the CDC breaks data down to causes, those traditionally associated with pregnancy—hemorrhage, hypertension and embolisms—actually appear to be decreasing. The increase is in a set of complications that current coding rules categorize as "other specified pregnancy-related conditions"—something linked to the pregnancy or childbirth, but not one of those formerly dominant problems.
"It's really difficult to know what they are, but they've increased dramatically and they've increased during the same time that the checkbox is being used," Callaghan said during a webinar on the issue in December.
Infections and cardiovascular conditions appear to be on the rise over the last five to 10 years, but the language here also lumps heart attacks and cardiomyopathy—diseases of the heart muscle—with problems resulting from uncontrolled, longstanding high blood pressure. His concern is that these chronic diseases seem to be affecting younger populations.
Physicians could screen for some of these conditions, and there are some obvious markers, like obesity, that cue a need to monitor heart health. But for some women, problems seem to come out of nowhere—and the "lay literature," as he calls the press, is packed with stories of women who didn't appear to be in a high-risk situation when something went wrong.
One possible contributor is that a generation of women born with congenital heart disease or cardiac abnormalities at birth that were corrected—women who in the past would not have survived childhood—and are reaching reproductive age, Callaghan says.
"The hard part about pregnancy mortality is that it's not like a war on disease, it's not, 'How do we fix deaths from colon cancer'—that's a very specific and clean question," Callaghan says. "You have women who come into pregnancy with all that they bring with them and the direct effects of pregnancy itself. There are multiple reasons why they might die."
In the numbers gathered in New Mexico, for a woman for the year following a birth, the leading single cause is accidents, to which 41 percent of these deaths were attributed. Fourteen percent were to suicide, and half that many to homicide. The causes more commonly associated with medical issues that arise during delivery include hemorrhage, embolism, hypertension and a catch-all "other" category. One of the problems Phelan identifies is that with about 20 deaths a year, and only eight to 10 of those pregnancy-related, patterns are tough to trace.
"When you have this small a number, it's tough to pick up trends or whether interventions are working," she says.
It may take reviewing a number of years at a time, or comparing notes with other states in the region.
In four decades of delivering babies, Phelan has noticed a visible difference in her patients: She sees more and more overweight or obese mothers. A healthy body mass index runs in the low- to mid-20s, and she's seen mothers come in at twice that, meaning their hearts are already essentially straining to pump for two. Add a pregnancy, for which the body's amount of blood increases by 40 percent, and they're up to three. The heart can't pump more blood with each beat, so it pumps more often. The chance of complications increases—so much so that the university's board on which nurses and doctors track the progress and condition of laboring moms now includes a category for body mass index (BMI).
“We suspect strongly that obesity has contributed to it,” says Callaghan, with the CDC. “It’s really hard to document with numbers, at the level of the data we have, but if I go out and talk to anybody in practice, it’s the first thing that they say.”
Women having children later in life may also be a contributing factor, and women over 40 have the highest mortality rates.
All this ambiguity and uncertainty around the causes can impair rolling out solutions. A program run by the Maternal and Child Health Bureau at the Health Resources and Services Administration specifically to increase the health of mothers and children around the country sends "bundles" to their pilot-program hospitals, equipping medical care providers with strategies and protocols for quickly addressing and preventing maternal deaths from some of the leading causes, hemorrhage, hypertension and cardiovascular disease among them.
Because there is often a gap between the rate at which white women and women of color die, one of those bundles specifically targets racial biases. Eleven states have adopted an effort to implement them throughout birthing hospitals, but any hospital can request them.
"It's free—you don't have to buy anything," says Kimberly Sherman, health lead, Division of Healthy Start and Perinatal Services for the Maternal and Child Health Bureau at the Health Resources and Services Administration. "You just need a champion in your community to say, 'What is the biggest issue that we face in our community? What would be like to implement?'"
So far, the majority of time and attention has gone to rolling out strategies for addressing hypertension and cardiovascular disease, but the Health Resources and Services Administration is also working on how to reduce injuries and address opioid misuse during pregnancy.
Another solution will be training everyone in the hospital to spot risk factors like a big baby, prior history of hemorrhage or a long induction, and to run practice drills on how to respond quickly, Callaghan says. Some hospitals have even put together hemorrhage carts like they have crash carts for cardiac events, and report that action is followed by as much as a 20 percent reduction in severe events.
At Lovelace, they've rolled out new protocols to catch hemorrhages, launched standardized approaches to make sure everyone on staff is aligned in how to discuss and manage patient response, and required bedside assessments within 15 minutes of certain vital signs that suggest a patient may soon need immediate intervention.
"Our work is going to continue, so despite fact that [the maternal mortality review bill] was vetoed, the perinatal collaboration and group that we've been working with are going to try to continue to do the work that we can," Lichtmacher says.
The numbers for Native American women show they appear to have problems at double the rate of white women. It's a small sample size, cautions Callaghan with the CDC, so that's partly why that information often goes unpublished.
Again, limited data intervenes: The CDC is also not allowed to publish anything about what state people live in, even when taking these numbers to the Indian Health Service (IHS). The rate is "important information, but then of course she would want to know how it was broken out by delivery in IHS hospitals or non-IHS hospitals, and we can't go there. … What's written on a death certificate is all we can say," he says. "If a maternal mortality review committee in New Mexico wanted to do that, they could do that. But all potentially identifying information has been redacted for most of what we get."
Native women face options limited by the facilities that exist in the rural communities where they often live, as well as by the menu provided by Indian Health Services. Birthing services are covered by the Indian Health Services, and Medicaid picks up where those facilities leave off. But because getting a Medicaid card takes time, they often miss early term check-ups, and issues can spiral from there. Gonzales sees the trouble starting even earlier.
"When I go to larger conferences and I'm the only Native woman talking to a room full of white people with degrees, all they want to talk about is how sick we are as Native women," Gonzales says. "I have to remind them that this isn't how we see ourselves, and there is a big piece of our story missing from this conversation—we as Native women are missing from this conversation about our health."
Throughout the process, there's a disconnection from the experience and a lack of ownership over it, Gonzales says.
That's among the motivators for her action. She traveled to Standing Rock to help care for the women there with babies and babies on the way, who otherwise faced an hour-long drive to a hospital in Bismarck. And back at home, she founded the nonprofit Changing Woman Initiative with which she plans to open a birthing center north of Santa Fe in Pojoaque as soon as next summer. Designs include an onsite teepee for women who'd like to birth outside, an oven for baking bread and a sweat lodge, all of which respond to data she's seen that half of Tewa women would like cultural practices to be incorporated into their birthing experiences. (They still do many of these traditions, often at home, before leaving for the hospital.) This center, modeled in part after successful native birthing centers in Canada, will also offer wraparound services on lactating, behavioral health and nutrition.
"What would our outcomes be as Native women if we had the support, if we had access to healthy food, if we had a community where we wanted to take care of each other, if we had information provided to us in a way that we understood? What would that look like?" Gonzales says. "Nobody knows. Nobody's tried it. Nobody cares to try it."
That's not the only population for which much remains unknown about what solutions need to be deployed. At the CDC, at best, researchers see cause of death, but how agencies report the chain of events leading to that death can vary based on the compulsions of the person filling out the certificate. Whether those problems cascaded through cardiac failure due to hemorrhage due to bleeding from a complication related to pregnancy or childbirth can get lost.
"The bottom line is, what's happening is, we think we're capturing more of the numbers, but we're not capturing data that can help us identify the real cause of it," says Lichtmacher, at Lovelace.
We can't, for example, know what role the epidemic of opioid use in New Mexico is playing. It's likely a factor in maternal mortality because it's contributing to deaths of women in that age group. But the death certificate just says "drug overdose" and the box that she died while pregnant may be checked.
"You don't know if it was opioids—you know almost nothing," Callaghan says. All he hears is peripheral, from physicians practicing in high-risk areas. They say it's a real problem.
That's why the agency has spent the last 20 years urging states to review their own deaths, to establish mortality review committees and study these issues at greater depth.
"They have public health law that allows them to make maternal deaths reportable, if they so desire, to allow committees to function and to have access to detailed medical records, so they can really find out the story," Callaghan says.
So far, 26 states have begun maternal mortality reviews.
About 24,000 infants die in the country every year, compared to about 700 maternal deaths. Their review is complicated in part by their relative rarity, but also by the emotions involved and the defensiveness they tend to incite. "Near-miss" interviews can be much more productive in generating learning opportunities.
"There's more attention to this in the public health community and the clinical community than there has been in my lifetime," Callaghan says. "There is more and more recognition that we have to do something, that we have to take care of pregnant mothers just like we've spent a lot of time taking care of the fetus that they've been carrying. In some ways, I think there's been some neglect around that, and right now, there's a lot of change."