There is no reaction except horror whenever my friend Rebecca shares her birth story. At 33 weeks pregnant with twins, she was diagnosed with intrauterine growth restriction and preeclampsia, a serious blood pressure condition, and had an emergency caesarean section in the hospital where she worked.
"After giving birth, I got very sick. I was really dizzy, started vomiting and my blood pressure dropped somewhere around the 50s over 30s," recalls Rebecca, who is now the director of nutrition at a pediatric center in New York. She describes an "impending sense of doom" when no one could figure out what was going on, and the catastrophes that followed were straight out of a nightmare. After multiple blood transfusions and forced expulsion of blood clots—"I felt like the OB was punching the shit out of my belly after a C-section"—the last thing she remembers is signing a waiver for an emergency hysterectomy to remove her uterus.
She woke up several days later in the ICU terrified. In that time, she had received as many as 35 blood transfusions and developed a lethal blood clotting disorder. While her uterus was fine, a radiologist finally discovered why her health deteriorated so quickly: She had three bleeding arteries. Multiple emergency procedures also resulted in a temporarily paralyzed bowel and several infections that kept her in the hospital for three weeks after giving birth.
How those arteries were injured remains a mystery, and six years later her frustration and fury is still palpable when she tells her story. Ultimately, malpractice attorneys told her that despite the near-death trauma, she had no case against the OB-GYN or the hospital. Why? Because she came out of the experience alive with no permanent physical damage.
You may have heard the story of Lauren Bloomstein that ended in tragedy: The 33-year-old neonatal nurse died 20 hours after giving birth due to undetected preeclampsia in 2011. Her story made national headlines this summer as part of a ProPublica and NPR investigation. Like Rebecca, she suffered a devastating series of problems after her delivery, which ultimately led to bleeding in the brain and a drop in her blood platelet count. With a platelet supply shortage in the hospital, she died within hours.
When women who are medical professionals—who have access to quality prenatal care and who deliver in the hospitals where they work—have life-threatening births, it suggests there is a much bigger, more systemic problem with childbirth in the United States. Every year, about 1,200 women in the US have fatal complications from pregnancy and childbirth, and another 60,000 have near-fatal complications, according to the World Health Organization. And for every headline-grabbing story, there are countless other women whose suffering is overlooked. Often, they are women of color.
Although women dying during and after childbirth is a relatively rare occurrence among the 4 million births in the US each year, the numbers tell a dark story. Our country ranks a dismal 50th among 59 developed countries for maternal mortality, according to Amnesty International. (We were 60th out of 180 countries in a 2014 study.) Bucking global trends, the rate of deaths in the US is rising, not falling, jumping dramatically from 16.9 deaths per 100,000 live births in 1990 to 26.4 per 100,000 live births in 2015. Though changes in how maternal mortality is tracked may account for some of that growth, the figures are still staggering. And about half of those deaths were preventable, according to the WHO.
Overall, the WHO reports that "the poorest and most marginalized women" continue to face the highest death risk from pregnancy- and childbirth-related causes. Domestically, that fact is all too clear: Black women are almost 3.5 times as likely as white women to die as a result of pregnancy (43.5 deaths per 100,000 live births for black women versus 12.7 deaths per 100,000 live births in white women). Texas—which has the highest maternal mortality rate in the country and in the developed world, at 35.8 deaths per 100,000 live births—has particularly shocking outcomes among black women. Though black women make up 11 percent of live births in the state, they account for 29 percent of the maternal deaths.
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How could this be the case? "In pregnancy, the body makes significant physiological adjustments, and that can put a woman at risk," says Haywood Brown, a maternal-fetal medicine specialist in North Carolina and president of the American Congress of Obstetrics and Gynecology (ACOG). "These days, we're also seeing increasingly more risk factors—giving birth later in life, chronic diseases, poverty, limited access to care—so when you have a cascade of events of things going wrong, they can go really wrong."
Surprisingly, those health factors are less linked to "direct" causes of death including hemorrhage, infection, and blood pressure disorders like preeclampsia which can develop quickly. Instead, cardiovascular disease is the number-one cause of maternal death within a year of giving birth, followed closely by other chronic diseases such as high blood pressure and diabetes.
"For women with known or unknown cardiac conditions, the [physiological] stress might tip the balance and she may well decompensate," says William Callaghan, chief of the Maternal and Infant Health Branch at the Centers for Disease Control and Prevention. "This could take many forms such as a heart attack, heart muscle failure, or the rupture of a blood vessel."
In 2014, the Center for Reproductive Rights, the National Latina Institute for Reproductive Health, and SisterSong released a joint report titled, "Reproductive Injustice: Racial and Gender Injustice in US Health Care." The report notes that cities and states with high African American populations have the highest rates of maternal mortality in the country, and the takeaway isn't just the enormous racial disparity, but intersectional factors that can stack the deck against marginalized women.
For one, many black women are at a health disadvantage to begin with. The CDC reports that nearly 57 percent of black women over 20 years old are obese and nearly 45 percent have high blood pressure. Other disenfranchising factors include dismal sex education and contraception access, higher rates of unintended pregnancies, restricted abortion access, subpar prenatal care—particularly for women covered by Medicaid—and poor communication and trust between doctors and patients.
Callaghan points out that when underlying health risks aren't recognized and properly managed, they can drastically impact pregnancy and childbirth. In a perfect world, those risk assessments would take place during a preconception or prenatal appointment, but that often isn't the scenario for disadvantaged women who may not have health insurance.
A 2010 report from Amnesty International, "Deadly Delivery: The Maternal Health Care Crisis in the USA," reports that women of color are 2.5 times more likely than white women to delay prenatal care. Bureaucratic hurdles within insurance coverage and Medicaid (which covers nearly half of all births in the US) can make it difficult to find a doctor, while women in rural areas are faced with a dwindling number of healthcare providers. Factor in logistical issues like transportation, taking time off work and arranging childcare, and the roadblocks to seeing a doctor in a timely fashion can be insurmountable.
Meanwhile, women with unintended pregnancies are also more likely to delay care; in the US, 45 percent of pregnancies are unintended, with rates highest among poor women, women of color, according to the Guttmacher Institute. And poor women are more likely to carry an unintended pregnancy to term: This group has an unplanned birth rate nearly seven times that of higher-income women. While 75 percent of abortion patients were poor or low-income, white women are still more likely than black or Hispanic women to have an abortion.
Then, when women with underlying health conditions make it to the delivery room, they may not have the birth that's best for them. Almost a third of babies in the US are delivered via C-section, up 50 percent since 1996, and experts believe that women of color and low-income women are less likely than other groups to have medically necessary C-sections and more likely to have medically unnecessary C-sections. Both of these situations are bad for women's health, and the decision to do a C-section is often made by a doctor on their behalf. C-sections are inherently more dangerous than vaginal deliveries, putting women at risk for infection, hemorrhage, injury, and scar tissue adhesion, and reaching a death rate of 11 out of 100,00 pregnancies. But if a woman needs a C-section and doesn't get one, that's also dangerous.
Since the passing of the Affordable Care Act in 2010, experts hoped maternal health outcomes would improve. After all, prenatal and maternal care and annual well-woman visits were established as essential health benefits covered without co-pays or deductibles and the eligibility for Medicaid was expanded. The goal was to take measured steps toward providing holistic care—including free prescription birth control, quality prenatal care, and in-hospital labor and delivery care—that could help prevent fatal complications among expecting mothers. (By the way, the Trump administration is expected to undo the free contraception rule any day now.)
But only 32 states chose to expand Medicaid and the ACA has been under attack ever since it was signed into law. And Obamacare still doesn't cover everyone: There were 28 million Americans without health insurance in 2016. With the repeal of the ACA under threat once again by Republican lawmakers, counteracted by a swelling, Bernie Sanders-sponsored movement toward universal health coverage, the future of women's healthcare access remains unclear. Sanders introduced a single-payer bill today, the same day two Republican Senators unveiled their last-ditch repeal bill.
In the meantime, experts are addressing the glaring need for collecting and analyzing data to get clearer understanding of what is going wrong in delivery rooms and to tackle those problems. Currently, maternal mortality tracking is done at a national level and essentially categorized by checking a box on a death certificate—a practice that means we could be vastly underreporting the number of maternal deaths. After all, if a woman dies of heart failure within a year of giving birth, it may not necessarily be categorized as pregnancy-related.
The CDC Foundation has determined that between 20 and 50 percent of maternal deaths in the US are preventable through the work of maternal mortality review committees (MMRCs). By relying on a cross-section of experts who represent areas such as obstetrics and gynecology, maternal-fetal medicine, forensic pathology, mental health, and social work, states can take a deeper dive into the causes of death and share that data more effectively. Bringing this type of analysis down to the state level is the goal of HR 1318, the Preventing Maternal Deaths Act of 2017, introduced by Representative Jaime Herrera Beutler of Washington state.
Many experts are looking to California, which has gone against the national trend and has seen a decrease, not increase, in maternal mortality. California Maternal Quality Care Collaborative is an initiative to make births safer for mothers through real-time data and toolkits that began in 2006. In the program's first seven years, California has seen maternal mortality decline by 55 percent, and first-birth C-section rates have gone down more than 20 percent in participating hospitals. North Carolina has also reduced the gap in racial disparities through a Medicaid-based program called Pregnancy Medical Home in which doctors identify high-risk pregnancies sooner than before, have a toolkit of medical procedures to help prevent problems at birth, and have a comprehensive postpartum follow-up appointment.
In fact, redefining postpartum care is a core goal of ACOG. In busy OB-GYN offices, a six-week postpartum checkup may be limited to a brief exam and a birth control prescription to help women space their pregnancies. "The postpartum period is critical for counseling for postpartum depression, breastfeeding continuation, pregnancy spacing, and contraception without ever considering a pelvic exam," Brown says.
However, longer-term postpartum care is a luxury that many new mothers can't afford in any capacity. "As many as 40 percent of women on Medicaid or who are uninsured don't make it to their six-week postpartum appointment," says Brown of ACOG. In addition to healthcare access issues, lack of paid maternity leave and work-family support often force mothers back to work before their babies can even hold own their heads up—much less make OB appointments—just so they can keep their jobs. In states that didn't adopt the Medicaid expansion, women above the federal poverty line who don't have insurance through work lose their pregnancy-related coverage at 60 days postpartum, while infants are covered for up to one year.
The fact is, our nation's medical and political systems have invested a lot of resources keeping fetuses and infants alive, and with demonstrable results: Although the number of babies that die each year still outpaces the number of women who die, infant mortality has dropped to its lowest point in 50 years, the CDC says, while maternal mortality is rising. The ProPublica/NPR report found stark differences in the level of care between infants and their mothers: hospitals that have state-of-the-art neonatal intensive care units may not have the same level of care for high-risk pregnant women, and some doctors training to specialize in maternal-fetal medicine may have never spent time in a labor and delivery unit.
As the healthcare debate rages on, mothers-to-be are at a huge risk of slipping through the cracks. "We fought the ACA repeal because it would have a great impact on women being able to have affordable health care, have access to contraception and prenatal care," Brown says. "If states that expanded Medicaid eliminate it, and those who make too much to qualify for Medicaid can't get insured, women would lose those essential health benefits and that will only increase the risk for maternal mortality."
It's darkly ironic with our "pro-life" administration at the helm.
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