The investigative reporting site ProPublica is calling out trusted health websites for publishing misleading, incomplete, or incorrect information about preeclampsia—a serious condition that affects up to 200,000 women a year in the United States. This dangerous form of high blood pressure can occur both during and after pregnancy, but ProPublica says many online resources omit or underplay some of the risks, especially in the postpartum period.
Preeclampsia has gotten plenty of buzz lately, thanks to Beyoncé’s recent Vogue article in which she describes her emergency C-section due to “toxemia,” another word for preeclampsia. It’s also been a plot point on at least two popular television shows in recent years—Downton Abbey in 2013 and Black-ish in 2017.
But despite its brushes with fame, there’s still a lot that people get wrong about preeclampsia. Here’s a deeper look at what this condition is, what ProPublica’s investigation found, and what doctors really want women to know.
What is preeclampsia?
According to the Preeclampsia Foundation (which ProPublica consulted with for its report), preeclampsia is characterized by the elevation of an expectant mother’s blood pressure, usually after the 20th week of pregnancy. It’s not clear what causes this spike in blood pressure, says Lauren Theilen, MD, an assistant professor of obstetrics and gynecology at the University of Utah. But certain risk factors—such as obesity, diabetes, and being over age 40—can make it more likely that a woman develops the condition.
“It can be a dangerous condition for moms and babies, in that it can affect how well the placenta is getting the baby what it needs to grow,” says Dr. Theilen, who was not involved in ProPublica’s report. “For the mom, the increase in blood pressure can increase her risk for things like seizures and stroke and can affect a variety of other organs, as well.”
Elevated protein levels in a woman’s urine used to also be required for a diagnosis, but the most recent guidelines from the American College of Obstetricians and Gynecologists say this is no longer the case. Instead, doctors can now look for other indicators of the disease, like decreased blood platelets, fluid in the lungs, seizures, visual disturbances, or signs of trouble with the kidneys or liver.
Preeclampsia is one of the most common causes of maternal death and severe complications in the United States, affecting 3% to 5% of expectant and new mothers. It’s also responsible for 15% of premature births. “Making the decision about how long to continue a pregnancy—and trying to balance the risks of preeclampsia and the risk of premature delivery—can be challenging,” says Dr. Theilen.
What are the symptoms of preeclampsia?
The symptoms of preeclampsia can vary from patient to patient, but many women experience headaches, abdominal pain, shortness of breath, burning in the chest, nausea and vomiting, confusion, or visual disturbances like flashing spots or blurred vision.
Women can also look and feel “swollen,” as Beyoncé described herself before giving birth to her twins. If the condition goes untreated, it can be fatal. According to the Centers for Disease Control and Prevention (CDC), preeclampsia kills more than 50 mothers a year in the United States and accounts for 7.4% of U.S. maternal deaths.
What do people (and health sites) get wrong?
Preeclampsia is often described as a condition that occurs “only during pregnancy,” according to ProPublica’s research; it’s also sometimes said that delivering the baby is “the only cure” for the condition.
It is true that delivering a baby is “the only thing that can stop the process that’s causing all of these clinical problems,” says Dr. Theilen. It’s also true that emergency deliveries—often a C-section performed weeks before a baby is due—are sometimes needed to save both the mother’s and the baby’s life.
But Eleni Tsigas, executive director of the Preeclampsia Foundation, told ProPublica that referring to delivery as a cure for preeclampsia is misleading, in that some women do not get better right away after giving birth. Some women even get worse after delivery.
Describing delivery as a cure “lets everybody off the hook,” Tsigas told ProPublica. “Moms, their partners, and even the providers all stop paying attention to mom’s health concerns after she delivers her baby. … We need to continue to monitor mom until her blood pressure and other vital signs return to normal.”
Dr. Theilen agrees that the postpartum risks could be communicated better. “A lot of laypeople hear the word ‘cure’ and think instant improvement,” she says. “But even though delivery interrupts the process that’s making you sick, you can still continue to be sick—and at risk for some of these dangerous complications—for several weeks after delivery.”
In fact, most women who die from preeclampsia actually die after giving birth, ProPublica points out, often from strokes. But new moms may be too overwhelmed to voice their concerns to a doctor, especially if they think the danger has passed. They may also have a hard time realizing that something’s wrong, especially because the symptoms of preeclampsia can also be part of a normal postpartum recovery.
Many websites also don’t mention that African-Americans are at especially high risk for preeclampsia, ProPublica reports. According to the CDC, preeclampsia is the third-leading cause of maternal death among black women, and they are more than twice as likely as white women to die from the condition.
Is there any good news?
After being contacted by ProPublica, some sites continue to list incorrect or incomplete information. But some, including the Mayo Clinic and Harvard Health Publishing, agreed to update or review their preeclampsia content.
New research is also bringing to light the lesser known dangers of preeclampsia, not just during pregnancy but also afterward. A recent study in the journal Hypertension found that women who have preeclampsia during pregnancy often have severe, undetected high blood pressure in the postpartum period.
Another study published this year in the Annals of Internal Medicine found that women who have preeclampsia during pregnancy have an increased risk of developing heart disease, diabetes, and high cholesterol later in life.
But despite the scary statistics, it’s important to keep in mind that most women with preeclampsia deliver healthy babies and fully recover. “At least 60% of preeclampsia deaths are preventable,” the ProPublica report states, “and patient education is an important part of the solution, experts say.”
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Dr. Theilen says that one of the most important things for women to know is that no matter when preeclampsia is diagnosed, it’s something that can be managed successfully. She’s also happy that more people—patients, doctors, and the media—are paying more attention to this condition.
“I do think it’s a good thing that we’re thinking about this, especially as the U.S. is trying to understand why one of the most developed countries in the world still has such a high maternal mortality rate,” she says. “This condition should be preventable for the vast majority of cases, and it’s important to learn how we can do better.”
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