Kristen Terlizzi woke up on July 16, 2014, in the intensive care unit at Stanford University to the news that the placenta connecting her to the child she'd just given birth to had spread like a cancer through her abdomen.
Six weeks earlier, Terlizzi, then 32, had been diagnosed with placenta accreta, a condition that can cause the placenta to grow out of control. In a normal pregnancy, the placenta develops inside the uterus, attaches to the uterine wall, and then is flushed out of the body after the birth.
In accreta, which doctors believe is most often caused by scarring from prior cesarean sections, the placenta sticks around and embeds. The condition was exceedingly rare in the 1950s, occurring in only one in 30,000 deliveries in the US. Today, because of the rise in C-sections, it shows up in about one in 500 births. One in 14 American women with accreta die, usually from hemorrhaging too much blood.
Childbirth is one of the most common reasons women go into hospitals, and yet the American health care system handles complicated pregnancies with a stunning lack of preparation and precision. Put simply, women who give birth in the US have a greater risk of dying relative to other rich countries — and the problem has been growing worse at a time when America’s peers have continued to make pregnancy safer.
Terlizzi could have died too. But the fact that she lives in California — a state that a decade ago decided to take the American tragedy of maternal death seriously — may well have saved her life.
Terlizzi’s only risk factor for accreta was a prior C-section with her first son, Everett. Her doctors had planned to surgically remove the placenta after Leo was born.
But when the surgeons opened up her abdomen, they discovered the placenta had filled her entire pelvis. “They couldn’t see anything not affected,” she said. Hers was such a risky case, they decided not to operate, and closed her up.
Several weeks later, still in the hospital, Terlizzi developed a deadly blood clotting condition caused by the leftover tissue. Doctors attempted to remove the rogue placenta again. During the second surgery, Terlizzi began to hemorrhage as surgeons raced to cut out the placental tissue, repair her bladder and ureter, and remove her uterus, cervix, and appendix.
A mother can bleed to death in childbirth within five minutes. But Terlizzi managed to hold on, as obstetric anesthesiologists carefully measured how much blood she was losing and gave her 26 units of blood products — effectively replacing all of the blood in her body.
Today, Terlizzi lives with her husband and two children in Silicon Valley, works in tech, and runs 20 miles per week. The only remnant from the surgeries is a wide, T-shaped scar across her belly.
Her pregnancy was so exceptionally complicated, it inspired a scientific journal case study. But it’s also emblematic of how unpredictably dangerous birth can be, even for healthy women — and how the deadliest pregnancy complications are survivable when hospitals prepare for them.
The Stanford doctors and nurses who treated her were ready with a precise set of steps to manage her care. Among them: hemorrhage guidelines created by a doctor named David Lagrew as part of Stanford’s California Maternal Quality Care Collaborative (CMQCC), a revolutionary initiative to make births safer for moms in the state. A decade into their project, they’ve proved that even within America’s imperfect health system, death in childbirth is not an inevitability.
California has managed to buck America’s grim maternal death trend
In the US, childbirth has been growing more dangerous recently. Maternal mortality — defined as the death of a mother from pregnancy-related complications while she’s carrying or within 42 days after birth — in the US soared by 27 percent, from 19 per 100,000 to 24 per 100,000, between 2000 and 2014.
That’s more than three times the rate of the United Kingdom, and about eight times the rates of Netherlands, Norway, and Sweden, according to the OECD.
It's a stunning example of how poorly the American health care system stacks up against its developed peers. More women in labor or brand new mothers die here than in any other high-income country. And the CDC Foundation estimates that 60 percent of these deaths are preventable.
But as the mortality rate has been edging up nationally, California has made remarkable progress in the opposite direction: Fewer and fewer women are dying in childbirth in the state.
So how did California manage to buck the trend? I was curious, particularly as American women’s health is under assault, with the GOP push to repeal and replace the Affordable Care Act.
I went to California to learn about what they were doing right, and found that all roads led to CMQCC, the multi-disciplinary health collective (based out of Stanford).
On my first day in Orange County, I met with Dr. David Lagrew, an OB-GYN and founding member of the CMQCC, at his office in St. Joseph Hospital. He’s been instrumental in helping drive down California’s maternal mortality rate, including creating the hemorrhage protocols that may have saved Terlizzi’s life.
A native of Kentucky, Lagrew moved to Southern California for a medical fellowship in 1984. About seven months in, he saw a placenta accreta case at Long Beach Memorial that has haunted him since.
“It was just blood everywhere,” he says, in a slow Kentucky drawl that’s softened after more than two decades in California, where he is now the medical director for women’s health for St. Joseph Hoag Health system, overseeing five hospitals in the region that do obstetrical work. This includes facilities in richer parts of the state, like Newport Beach, and low-income areas like Apple Valley, an isolated town on the edge of the Mojave Desert.
“The lady ended up getting over 50 units of blood,” he recalls. The hospital didn’t know how to the handle the bleeding, and Lagrew watched the mother go limp and die on the operating room table.
Around that time, an influential paper was published in the journal Obstetrics and Gynecology, establishing the connection between the exponential rise in C-section rates and placenta accreta cases.
Lagrew started wondering about the suffering and death he had seen in the OR that day, and how much of it was preventable, given that so many C-sections aren’t medically necessary. (Doctors sometimes perform them to wrap up cases faster — and get reimbursed — before the end of their shift. Patients also request them for reasons that have nothing to do with health.)
Lagrew, who has neatly cropped salt-and-pepper hair and wire-rimmed glasses, is obsessed with numbers, a self-professed “data geek.” He spent part of his undergraduate degree teaching himself computer programming, and coded for the Forestry Department at the University of Kentucky to pay his way through school.
He thought that if he could gather data on doctors’ C-section rates, and educate his fellow clinicians about how many they were doing and the risks of unnecessary surgeries, he might be able to reduce C-sections that aren’t medically indicated — and complications like placenta accreta.
By 1989, when Lagrew was appointed medical director at Saddleback Hospital in Laguna Hills, he began to test his approach. When he’d hand doctors data on their C-section rates, some would say, “What the heck is this?" Some would even scream at him, he recalls. "I didn't do this one C-section and you put it on my report!" they’d say.
Lagrew would respond: “What about the other 215?”
The approach worked. The C-section rate at Saddleback was halved within five years.
Lagrew has now managed similar feats at the eight hospitals where he’s worked since, and at hundreds more in the state through CMQCC.
His method is a microcosm for how CMQCC works: Collect data about maternal health, zero in on the complications that can be prevented, figure out what the evidence says about the steps required to prevent them, and then engage stakeholders and mentor them as they follow those lifesaving steps.
The organization, which runs as a collective and is mainly funded by the California Healthcare Foundation, California Department of Public Health, and the Centers for Disease Control and Prevention, was imagined in a Los Angeles airport hotel meeting room in 2006, a time when the state’s maternal mortality rates had recently doubled.
A group of concerned doctors, nurses, midwives, and hospital administrators, including CMQCC medical director Elliott Main, started a maternal mortality review board to pore over each death in detail and identify its root causes. Pretty quickly, hemorrhage and preeclampsia (pregnancy-induced severe high blood pressure) floated to the top of the list as the two most common — and preventable — causes of death.
It’s difficult to overstate how revolutionary this simple first step was in the arena of maternal health. About half of US states still don’t formally review the causes of maternal death on a regular basis to find out which deaths are preventable and how to stop future similar deaths from occurring. The US National Center for Health Statistics hasn’t even published an official maternal mortality rate since 2007 — that’s how low-priority this issue is.
Mothers die too often because women’s health isn’t valued in the US
One of the United Nations’ Millennium Development Goals focused on driving down the maternal mortality rate. This led to efforts in almost every country to save moms’ lives — and they were largely successful: The global maternal mortality rate dropped by 44 percent worldwide between 1990 and 2015, and by 48 percent in developed countries.
The US was one of only 13 countries, including North Korea and Zimbabwe, that saw its maternal death rate increase since 1990.
“We are going in opposite direction of the whole worldwide trend,” says University of Maryland researcher Marian MacDorman, who co-authored the best available national study of US maternal mortality in 2016.
“It’s a travesty,” says MacDorman. “Mongolia has a maternal mortality rate, and the US with all our wealth and health care can’t publish a maternal mortality rate.”
Part of America’s increase has to do with changes in how maternal deaths are codified on death certificates. In the 1980s, health officials realized that maternal deaths were being underreported, which led to a push for better reporting.
But that’s far from the only explanation, according to MacDorman and other researchers who study maternal health.
For one, there’s been a decline in access to contraception and abortion in many parts of the US, leading to more unplanned, unwanted — and, in some cases, more dangerous — pregnancies.
The opioid epidemic certainly hasn’t made births safer for moms, and health care access remains poor for low-income and minority women, who have among the worst maternal health outcomes. The exponential increase in C-sections, which can sometimes save moms’ and babies’ lives, has also contributed to more pregnancy complications in subsequent births, such as accreta.
American women are also heavier on average, and having babies later in life, often with more chronic health conditions, putting them at a higher risk of complications in the maternity ward.
Yet other developed countries have seen similar health trends in rising childbirth age and bodyweight — without the accompanying increased death risk for mothers.
That’s led researchers like Boston University maternal health expert Eugene Declercq to conclude that a key driver of America’s maternal mortality problem is that America doesn’t value women.
“The argument we make internationally is that [a high maternal death rate] is often a reflection of how the society views women,” he says. “In other countries, we worry about the culture — women are not particularly valued, so they don’t set up systems to care for them at all. I think we have a similar problem in the US.”
Policies and funding dollars tend to focus on babies, not the women who bring them into the world. For example, Medicaid, the government health insurance program for low-income Americans, will only cover women during and shortly after pregnancy. “Nothing has captured it better for me than that: Get on when you’re pregnant, but get off when you’re not,” Declercq said. Only 6 percent of block grants for "maternal and child health" under the Title V Maternal and Child Health Services Block Grant Program goes to moms.
In the absence of national leadership, however, there are advocates at the state level who are working on the problem. One place that stands out is California.
As of 2013, there were 7.3 deaths per 100,000 in California — bringing the Golden State in line with countries like the United Kingdom or Portugal. That’s also half of what the state’s maternal death rate was in 2006, and a third of the national rate.
Considering that more than half a million women give birth in California each year, representing one-eighth of all US births, the progress in curbing maternal mortality has been profound.
“Hemorrhage carts” have made birth safer for moms in California
To start to tackle the problem, CMQCC created “toolkits,” which are essentially evidence-based, step-by-step recipes — downloadable for free — on how teams of health care providers in hospitals can best prepare for and manage the sometimes deadly complications that arise with childbirth.
The first toolkit, which Lagrew co-chaired, focused on maternal hemorrhage — what their maternal death review revealed was one of the most common and preventable causes of death in California.
Only about 2 percent of a woman’s total blood volume flows through her uterus. During pregnancy, though, that number rises to 10 percent to nourish the placenta and the baby. The most common cause of postpartum hemorrhage is a uterine atony — when the uterus does not contract and stop bleeding after the placenta breaks off.
About 30 percent of women who experience an obstetric hemorrhage don’t have an identifiable risk factor, so it’s hard to know who might be at risk.
One key idea in the hemorrhage toolkit was to make sure hospitals were armed with all the best protocols and necessary tools that might save those moms’ lives in the event of a bleed.
At St. Joseph hospital, Lagrew showed me a simple beige, waist-high rolling cart with four drawers and red handles, known as “the hemorrhage cart.” Every hospital delivering babies should have one, the CMQCC toolkit says. The cart is filled with everything to manage a hemorrhage: medicines that slow the flow of blood, instruments that repair a tear or laceration, intrauterine balloons that can provide pressure and control bleeding from a uterus that isn’t contracting well.
“Minutes count, so you can't afford to be thinking, ‘Hey, what med do I need to use next? Where do I find a balloon catheter to stop the bleed?’” Lagrew says.
When CMQCC did their root cause analysis on what was causing moms to die in their state, they found that hospitals typically didn’t have these simple things on hand. So they borrowed the idea from the “code blue cart” that’s common in hospitals to quickly treat patients who go into cardiac arrest.
“No one had ever made the code blue for obstetrical hemorrhage,” Lagrew added. “They just said, ‘Use this drug, you need these drugs. You need to measure blood better.’”
Learning about CMQCC’s approach opened my eyes to all the places where maternal health care — managing one of the most universal experiences women go through — isn’t very precise or evidence-based.
Another piece of guidance in the CMQCC hemorrhage toolkit is that doctors and nurses need to have blood products ready for moms who bleed in childbirth, and they should carefully measure blood loss during the pregnancy to make sure the patient’s levels are being adequately replenished.
To do this, CMQCC recommends a practice called “quantitative blood loss,” Lagrew explained, “which, by the way, in all your medical school or residency, no one ever teaches you how to do.”
Doctors and nurses typically eyeball blood loss — and these estimations are notoriously inaccurate. Instead, CMQCC suggests weighing dry sponges and pads that collect blood on the operating table before a surgery, and then doing so again after they’ve been soaked to calculate how much blood a mother lost.
Lagrew is now trying to make the process even better at his hospitals. In the labor and delivery ward that day, where Brahms' Lullaby chimes whenever a baby is born alongside the ever-present hum of fetal heart monitors, I watched a training session for nurses on how to use a machine that automates quantitative blood loss.
The founder of the Silicon Valley company Gauss Surgical, Siddarth Satish, noticed that every vital sign in the operating room was carefully monitored and measured, except for blood loss. So he created Triton OR, an FDA-approved blood loss monitor with an iPad interface that allows health care providers to quickly weigh their tools before they’re filled with blood and afterward. Lagrew introduced the machine at the hospital as part of a pilot — one of many things he’s constantly experimenting with to make childbirth safer.
“It's classic process improvement to the point where the doctors and nurses go, ‘Wow. We just had this placenta accreta, but everything went pretty smoothly,” he said. “We didn't lose that much blood. The patient's doing great, and didn't go in the intensive care unit.’”
Hospitals and doctors in California are now competing with one another to save moms’ lives
I wanted to see how the CMQCC approach worked in a resource-strapped area of the state, so I visited St. Joseph Health, St. Mary, a hospital that delivers nearly half of the babies born in and around Apple Valley.
Apple Valley is a town filled with hills of dusty golden rocks and strip malls in a remote region of Southern California, sandwiched between Los Angeles and Las Vegas. Here, the median household income is $47,938 — about a third of Newport Beach’s.
Almost all the pregnancies nurses and doctors see here are complicated by diabetes, hypertension, addiction, or other issues that put moms and babies at a higher risk of death.
Remarkably, though, St. Mary’s hasn’t seen a maternal death in at least 23 years.
Sitting in front of a stack of charts, Mendy Hickey, a nurse, beamed about gains on maternal health measures. St. Mary’s had just won a CMQCC award for their low C-section rate — among the lowest in the state, at 21 percent. They’d massively driven down their rate of early elective deliveries, or births that happen before 39 weeks gestation, by following CMQCC’s approach.
Babies who are born prematurely have a higher chance of winding up in the neonatal intensive care unit and needing respiratory support, Hickey said. For moms, early deliveries mean more inductions and C-sections — and more potential complications.
Hickey and her colleagues started talking about early elective deliveries at every department meeting. They posted data about doctors’ individual rates in the units and doctor lounges. “That always works really well,” she said. “They're very competitive.”
When they spotted an early delivery that wasn’t medically necessary, the department chief would have a conversation with the physician about her decision, and suggest the doctor avoid doing so again.
Joining CMQCC also allowed St. Mary’s to access a data center where they could compare their progress on maternal health against other hospitals and doctors in the state. “The database alone has been huge,” Hickey says.
The results have been staggering. St. Mary’s started to focus on early elective deliveries in late 2014, when they were 9 percent of all births at the hospital. By 2016, 2 percent of babies were being delivered early when it wasn’t medically indicated. “Data speaks,” Hickey said. “Data speaks — big time.”
Every doctor and nurse I spoke to that day was plugged into these quality improvement efforts. They bragged about their award-winning low C-section rates and reducing hemorrhage risk like they were talking about their children’s report cards.
I could also see how it affected patients’ lives, particularly in the neediest and most complicated cases.
Skye Brooks, a 24-year-old mom, had recently given birth to her son, Onyx. Before her unplanned pregnancy, she’d worked as a package handler and sorter at an Amazon warehouse in nearby San Bernardino. She had Type 2 diabetes, which heightened her risk of pregnancy-induced high blood pressure (or preeclampsia).
At a checkup 29 weeks into the pregnancy, her doctor discovered her blood pressure had shot up to a dangerously high 253/186, and that she wasn’t responding to hypertension medication. High blood pressure can cut off the amount of blood and nutrients that reach the fetus, restricting the baby’s growth.
Brooks was quickly shuffled off for an emergency C-section that saved her life. “I would have had a stroke if I didn’t deliver,” she says, while rocking Onyx in the neonatal intensive care unit, a beige room humming with the buzz of vital sign monitors and incubators.
California could inspire the rest of the country, but the GOP health reform bill could make America’s maternal health worse
CMQCC’s toolkits have been downloaded more than 24,000 times, and more than 200 of California’s 243 maternity hospitals have joined the organization to work on improving maternal health.
In one recent study, researchers found a 21 percent reduction in severe health problems associated with hemorrhages in the California hospitals participating in CMQCC’s programs. Hospitals that didn’t join the effort saw a non-significant 1 percent reduction. Since CMQCC’s founding, California has also seen its maternal mortality rate decline by 55 percent at a time when other states are documenting increases.
Large employers in California, including Disney and Apple, as well as insurance payers have recognized that making births safer saves them money. They’ve supported CMQCC by helping pressure hospitals to follow the steps to protect women in the workforce — and avoid incurring unnecessary costs that drive up insurance premiums.
CMQCC is working with other health care groups to take their work national. But today, California’s efforts are at odds with the direction the federal government is moving on women’s health. Senate Republicans are pushing to repeal and replace Obamacare with the Better Care Reconciliation Act. It could make it harder for American women to access reproductive health care and family planning services. It’ll make maternity benefits optional for private health plans, and defund Planned Parenthood — where 2.5 million Americans access family planning and maternity care services.
The Better Care Act would also gut Medicaid, which covers about half of all births in the US. If the GOP plan passes, the nonpartisan Congressional Budget Office expects it will result in more unplanned pregnancies and 22 million people losing their health care within a decade.
For a preview of what this could do to women’s health, look to Texas, which has the highest maternal mortality rate in the developed world. There, 36 moms die per 100,000 births, or five times California’s maternal mortality rate. Texas has also closed down Planned Parenthood clinics and rejected Medicaid expansion — changes the GOP would like to see ripple across the US. The state boasts the largest uninsured population in America.
But long before the GOP plan or the current health reform debate, the US lagged behind other rich countries when it comes to providing women access to the comprehensive health care necessary for safe pregnancies and deliveries.
“There are a lot of areas where America’s policies are less protective [for mothers] than they are in Canada, Europe, and other developed countries,” said Adam Sonfield, senior policy manager at the Guttmacher Institute. “Being able to take time off from work to go to the doctor, and having child care to make sure you can go to that doctor, and making sure you have affordable transportation to go to that doctor” — it’s uniformly more difficult for American moms.
In the US, we haven’t bothered to create national health policies around maternity care that are focused on improving outcomes for mothers, such as a federal maternity leave policy or universal health care.
Maternal health is also becoming more complicated. The clinical complications CMQCC has focused on so far — hemorrhage, preeclampsia — are being outpaced by lifestyle-related health issues, like cardiovascular disease and opioid addiction. There are also astounding racial disparities in maternal health: Black mothers are three times more likely to die in childbirth than white women. It’ll require more than well-meaning doctors and nurses to fix these problems.
Still, California has demonstrated that even in our messy and imperfect health care system, progress is possible. They’ve shown the rest of the country what happens when people care about and organize around women’s health. Policymakers owe it to the 4 million babies born in the US each year, and their mothers, to figure out how to bring that success to families across the country.
The difference between Texas and California is that California decided to take on maternal mortality, Boston’s Eugene Declercq told me.
Kristen Terlizzi, the accreta patient who started the National Accreta Foundation to raise awareness about it, has been thinking about the potential health reforms coming down.
“I’ve come to appreciate the concerns about lifetime limits. Thank God my surgery happened before this was an issue,” she said of the GOP push to reintroduce caps on how much health care costs patients can get coverage for over a lifetime. “I had this perception that maternal mortality was a faraway issue or an issue of the past. I thought this happened in other places. I had no idea healthy mothers in this country were experiencing things like this.”
For more on this story, listen to our maternal health episode of Vox’s The Impact podcast.
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