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Advice From Mothers Who Almost Died: What they would say to other new and expectant mothers

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Adriana Gallardo and Nina Martin, ProPublica, and Renee Montagne, NPR, report in ProPublica:

Four days after Marie McCausland delivered her first child in May, she knew something was very wrong. She had intense pain in her upper chest, her blood pressure was rising, and she was so swollen that she barely recognized herself in the mirror. As she curled up in bed that evening, a scary thought flickered through her exhausted brain: “If I go to sleep right now, I don’t know if I’m gonna be waking up.”

What she didn’t have was good information about whatmight be wrong. The discharge materials the hospital sent her home with were vague and confusing — “really quite useless,” she said. Then she remembered a ProPublica/NPRstory she’d recently read about a New Jersey nurse who died soon after childbirth. Lauren Bloomstein had developed severe preeclampsia, a dangerous type of hypertension that often happens during the second half of her pregnancy. But it can also emerge after the baby is delivered, when it is often overlooked — accounting for dozens of maternal deaths a year. McCausland realized that she might have preeclampsia, too.

The 27-year-old molecular virologist and her husband bundled up their newborn son and raced to the nearest emergency room in Cleveland. But the ER doctor told her that she was feeling normal postpartum symptoms, she said. Even as her blood pressure hovered at perilous heights, he wanted to send her home. Several hours passed before he consulted with an OB-GYN at another hospital and McCausland’s severe preeclampsia was treated with magnesium sulfate to prevent seizures. Without Bloomstein’s story as a warning, McCausland doubts she would have recognized her symptoms or persisted in the face of the ER doctor’s dismissiveness. “I had just come home with the baby and really didn’t want to go back to the hospital. I think I probably would have just wrote it off.” In that case, she added, “I don’t know if I’d be here. I really don’t.”

McCausland’s experience is far from unique. In the months since ProPublica and NPR launched our project about maternal deaths and near-deaths in the U.S., we’ve heard from 3,100 women who endured life-threatening pregnancy and childbirth complications, often suffering long-lasting physical and emotional effects. (Tell us your story.)

The same themes that run though McCausland’s story echo through many of these survivors’ recollections. They frequently told us they knew little to nothing beforehand about the complications that nearly killed them. Even when the women were convinced something was terribly amiss, doctors and nurses were sometimes slow to believe them. Mothers especially lacked information about risks in the postpartum period, when medical care is often disjointed or difficult to access and the baby is the focus of attention. “Every single nurse, pediatrician, and lactation consultant dismissed my concerns as hormones and anxiety,” wrote Emily McLaughlin, who suffered a stroke and other complications after giving birth in Connecticut in 2015.

These survivors make up an important, and largely untapped, source of knowledge about the dangers that expectant and new mothers may face — and how to avoid disaster. Every day in the U.S., two to three women die from pregnancy- or childbirth-related causes, including preeclampsia, hemorrhageinfectionblood clots and cardiac problems — the highest rate of maternal mortality among wealthy nations. As many as 60 percent of these deaths are preventable, a new report suggestsmore than half occur after delivery. (See our story on the lost mothers of 2016.) Each day, another 175 women suffer complications severe enough to require major medical intervention such as massive transfusions, emergency surgery or admission to an intensive care unit — equivalent to about 65,000 close calls annually, according to the Centers for Disease Control and Prevention.

Hospitals, medical organizations and maternal safety groups are introducing a host of initiatives aimed at educating expectant and new mothers and improving how providers respond to emergencies. But as McCausland’s experience illustrates, self-advocacy is also critically important.

We asked survivors: What can people do to ensure that what happened to Lauren Bloomstein doesn‘t happen to them or their loved ones? How can they help prevent situations like Marie McCausland’s from spiraling out of control? What do they wish they had known ahead of their severe complications? What made a difference in their recovery? How did they get medical professionals to listen? Here is a selection of their insights, in their own words. . .

Continue reading.

Written by LeisureGuy

3 August 2017 at 3:15 pm

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