Thousands of parents and babies get sick each year from preeclampsia, a life-threatening hypertensive disorder of pregnancy, but hope is on the horizon.
Laney Poye
Director of Communications & Engagement, Preeclampsia Foundation
In early 2013, Trashaun Powell was pregnant with her first child, a baby girl that she and her husband JP decided would be named Mia Jane. The day after the family gender reveal party, Powell woke up feeling like she had the flu, with pain in her upper stomach, vomiting, and a headache so intense she could barely see. Her care providers told her to stay home and rest because it sounded like a stomach bug.
For Powell, something felt very wrong. She called JP and told him she needed to go the emergency department immediately.
After running some quick tests, her doctors shared the grim news: Powell had developed HELLP syndrome, a life-threatening hypertensive disorder of pregnancy. Her kidneys were shutting down, her platelet count was dropping dangerously low, and her liver had begun to hemorrhage causing major issues to her other vital organs. She was bleeding internally.
Then came the stunning news. They would have to deliver her baby right then. She was only 23 weeks pregnant.
Currently, the only cure for preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy starts with the immediate delivery of the baby and the placenta, no matter what the gestational age of the baby. It is a leading cause of both premature birth and maternal death.
Falling through the cracks
Today, preeclampsia is diagnosed in pretty much the same way that it has been since the 1950s — by pregnant people faithfully attending their prenatal appointments, where their blood pressure is taken and their urine checked for protein. If they miss an appointment, a provider forgets a procedure or dismisses a warning sign, or the condition develops or worsens rapidly, patients like Powell can simply fall through the cracks, until their condition becomes a life-threatening crisis.
“Behind the statistic ‘800 women die in pregnancy in the United States each year,’ are our sisters, daughters, friends — real women with partners, children, families,” said Preeclampsia Foundation CEO Eleni Tsigas. “Most alarming is that irrespective of education, income, or other socioeconomic determinants of health, Black women in the United States are three to four times more likely to die during pregnancy and the postpartum period.”
Powell spent two full weeks in the intensive care unit of her local hospital, as her health care providers performed multiple surgeries, transfusions, and other procedures to save her life. Thankfully, Powell made it. Her 1 lb, 1 oz Mia Jane did not.
“When JP and I decided to try again after losing Mia, it was the scariest decision of our lives,” shared Powell. “We knew the risk I was running by becoming pregnant again, but this time around I was heavily monitored by a high-risk specialist and began taking a baby aspirin beginning at my second trimester.”
Outdated prevention and treatment
Currently, the only approved therapeutic for the prevention of preeclampsia is aspirin therapy, begun between 12-16 weeks’ gestation among pregnancies considered at high risk for developing the condition. But some people, including Powell, develop preeclampsia even when their only risk factor is first-time pregnancy. The prediction, prevention, and treatment protocols in place here in the United States are simply not enough.
“Powell publicly shares her story as a Foundation patient advocate to amplify many of the challenges that we have here in the United States with maternal health care,” said Tsigas. “Research has shown that 60 percent of maternal deaths from preeclampsia can be prevented by providers listening to their patients, more rapid testing and treatment, and tighter management of a patient’s hypertension.”
But it’s also not enough to advocate for consistent care based on what we currently know. That’s why the Preeclampsia Foundation focuses on three Pillars of Purpose to drive innovation and patient engagement in these efforts:
- Community — educating pregnant people and supporting those who experience preeclampsia both mentally and physically.
- Healthcare — adopting care bundles with known practices, while advocating for better prediction, diagnosis, and treatment.
- Research — understanding more about the cause of preeclampsia and developing a cure.
