In recent months, mothers who nearly died in the hours and days after giving birth have repeatedly told ProPublica and NPR that their doctors and nurses were often slow to recognize the warning signs that their bodies weren't healing properly.
A study published Tuesday in MCN: The American Journal of Maternal/Child Nursing substantiates some of those concerns. Researchers surveyed 372 postpartum nurses nationwide and found that many of them were ill-informed about the dangers mothers face after giving birth.
Needing more education themselves, they were unable to fulfill their critical role of educating moms about symptoms like painful swelling, headaches, heavy bleeding and breathing problems that could indicate potentially life-threatening complications.
By failing to alert mothers to such risks, the study found, nurses may be missing an opportunity to help reduce the maternal mortality rate in the U.S., the highest among affluent nations. An estimated 700 to 900 women die in the U.S. every year from pregnancy- and childbirth-related causes. Another 65,000 nearly die, according to the Centers for Disease Control and Prevention. The rates are highest among black mothers and women in rural areas. A recent CDC Foundation analysis of data from four states found that close to 60 percent of maternal deaths were preventable.
Nearly half of the nurses who responded to the survey were unaware that maternal mortality has risen in the U.S. in recent years, and 19 percent thought maternal deaths had actually declined. "If [nurses] aren't aware that there's been a rise in maternal mortality, then it makes it less urgent to explain to women what the warning signs are," says study co-author Debra Bingham, who heads the Institute for Perinatal Quality Improvement and teaches at the University of Maryland School of Nursing.
Only 12 percent of the respondents knew that the majority of maternal deaths occur in the days and weeks after delivery. Only 24 percent correctly identified heart-related problems as the leading cause of maternal death in the U.S.
In fact, cardiovascular disease and heart failure — which, according to recent data, account for more than a quarter of maternal deaths in this country — were "the area that the nurses felt the least confident in teaching about," says Patricia Suplee, an associate professor at the Rutgers University School of Nursing in Camden, N.J., and the lead researcher on the study.
Nurses also said they spent very little time — usually 10 minutes or less — instructing new moms about warning signs of potential complications. Many of the nurses said they were only likely to discuss such life-threatening conditions as pre-eclampsia (pregnancy-related high blood pressure), blood clots in the lungs or heart problems "if relevant," though it was unclear what that meant. As the study noted, "it is impossible to accurately predict which women will suffer from a post-birth complication."
The post-delivery education provided by nurses is particularly important because once a mother leaves the hospital, she typically doesn't see her own doctor for four to six weeks. Up to 40 percent of new moms, overwhelmed with caring for an infant and often lacking in maternity leave, child care, transportation and other kinds of support, never go back for their follow-up appointments.
Figuring out the best way to instruct new mothers is all the more crucial, the survey noted, because the first days after giving birth are "exhausting, emotionally charged and physiologically draining" — hardly an ideal learning environment. But like so many other important aspects of maternal health care, postpartum education has been poorly studied, Bingham says.
The respondents, of whom nearly one-third had master's or doctoral degrees, were members of the Association of Women's Health, Obstetric and Neonatal Nurses, the leading professional organization for nurses specializing in maternal and infant care. The association began looking at the education issue in 2014, when Bingham was the association's vice president of nursing research and education. "We had to start really from the ground up, because we didn't know exactly what women were being taught," she says.
In focus groups conducted in New Jersey and Georgia, two states with especially high rates of maternal mortality, researchers discovered that postpartum nurses spent most of their time educating moms about how to care for their new babies, not themselves. The information mothers did receive about their own health risks was wildly inconsistent and sometimes incorrect, Bingham says. The written materials women took home often weren't much better.
Some nurses were uncomfortable discussing the possibility that complications could be life-threatening. "We had some nurses come out and say, 'Well you know what, I don't want to scare the woman. This is supposed to be a happy time. I don't want to seem like all I want to talk about is death,' " Bingham says.
But the researchers also found that nurses could be quickly educated with short, targeted information. Using insights from the focus groups, an expert panel developed two standardized tools: a checklist and script that nurses could follow when instructing new mothers and a one-page handout of post-birth warning signs that mothers could refer to after they returned home, with clear-cut instructions for when to see a doctor or call 911.
Those tools were tested in four hospitals in 2015. "Very quickly, we started hearing from the nurses that women were coming back to the hospital with the handout, saying, 'I have this symptom,' " Bingham says.
One of them was a Georgia mom named Sarah Duckett, who had just given birth to her second child. A week later, she recognized the warning signs of what turned out to be a blood clot in her lung, a postpartum complication that can be fatal. "Those were anecdotes, but they were very powerful anecdotes," Bingham says. "I've led multiple projects over the years, and rarely do I get such immediate feedback that something is working."
The shortcomings documented by the national survey could foster wider use of these tools, suggests Mary-Ann Etiebet, executive director of Merck for Mothers, which funded the study as part of a 10-year, $500 million initiative to improve maternal health around the world. "Something as simple as creating educational and training programs for nurses ... can have a real impact," she says.
AILSA CHANG, HOST:
On average, two mothers die from complications of pregnancy and childbirth every day in America. That's a rate far higher than in other wealthy countries. NPR's Renee Montagne and ProPublica's Nina Martin are investigating the reasons why. This morning we hear that the most vulnerable time for a mother is after she has her baby.
RENEE MONTAGNE, BYLINE: It is a fact that can surprise even the experts. Debra Bingham is a perinatal nurse with a doctorate in public health and a leader in the movement to bring down maternal mortality. She remembers sitting in a meeting a few years ago where she was struck by the number of deaths that can happen in the days and weeks after giving birth.
DEBRA BINGHAM: And all of a sudden, a big light went off in my mind. And it's like, oh, my gosh - the bulk of the deaths, 61 percent, are occurring in the postpartum period.
MONTAGNE: Sixty-one percent, a CDC statistic that floats up and down but has stayed consistently over 50 percent. Most women die within six weeks of birth, many in the very first week.
BINGHAM: No one can predict. The women can't predict; the nurses can't predict nor the doctors predict which women are going to have certain types of complications. Every woman should know about the post-birth warning signs. What are the symptoms? Which ones are emergencies?
MONTAGNE: But most women are not educated about postpartum risks, like Lindsay Averett in Decatur, Ga. When she gave birth to a healthy baby girl, it was more difficult than with her earlier twins. Lindsay's placenta wouldn't come out, so her obstetrician had to remove it in pieces. Here's how she remembers being discharged.
LINDSAY AVERETT: And you get the folder of aftercare instructions. And the nurse comes in and, like, (laughter) speed-reads this list of things to you. And, you know, you're still in vampire mode and hiding from sunlight as they're opening the blinds and trying to get you out of the door. And so it's possible that, you know, they mentioned things about how long afterpains should continue. But I don't recall that ever happening.
MONTAGNE: For her, those severe afterpains when she nursed her baby never stopped. And she was clammy and feverish. But...
AVERETT: A lot of what I was feeling, I - you know, I attributed to the hormonal regulation and sleep deprivation.
MONTAGNE: And it wasn't until a lactation consultant told her that those pains were not normal two full weeks after birth that Lindsay made an emergency call to her obstetrician. When he discovered her uterus was full of placental tissue and that she had a temperature of 105, her husband rushed her to the hospital.
AVERETT: Yeah, I'm a very left-brained, rational person. But I just had this overwhelming sense that I was going to die. And my response was to just to start telling my husband, you know, what to do for our children and to let them know that I loved them. And, you know, our 2-week-old baby's in the back backseat screaming. And I just kept telling him, I have to tell you this now, I said - because I just had the sense that I didn't have a lot of time. And I wanted him to understand.
MONTAGNE: When they got to the hospital, a nurse told Lindsay it looked like she was going into septic shock and that she needed to give the baby to her husband so they could prep her for surgery.
AVERETT: And I just - for the first time, that day, I just became just wild with grief and sadness and rage. I mean, I just couldn't - I couldn't have her taken for me because I was - in that moment, I just realized this could be the last time I hold my baby. (Sobbing) And I said you can give me the IV in the hallway. You know, I'll sign a release or whatever. You can treat me here. I said, but if this is the last time, I'm not going to let her go before I have to.
MONTAGNE: What should have been a 30-minute operation took two hours. But Lindsay Averett was able to go home that day. If there is a front line for educating mothers like Lindsay about postpartum troubles, it is the nurses. A new survey of what they know is online today; 372 members of the Association of Women's Health, Obstetric and Neonatal Nurses responded. Study author Debra Bingham says the results point to a critical gap in their knowledge.
BINGHAM: Some of the striking findings for us was that 46 percent of the nurses surveyed were not aware that maternal mortality rates had increased in the last decade. In fact, 19 percent thought maternal mortality had decreased.
MONTAGNE: A majority did not know that most maternal deaths occur postpartum. And two thirds of the nurses reported spending less than 10 minutes going over the warning signs. Plus, lead author Trish Suplee says many shied away from talking about the postpartum complications that could prove fatal.
PATRICIA SUPLEE: One of the things that we did hear from nurses was, well, we don't want to scare them.
MONTAGNE: Certainly, some mothers will be frightened. Marie Rose McCausland is not one of them. The week before she gave birth in Cleveland, she came across our NPR/ProPublica story on the forum Baby Bumps on Reddit. Someone had posted it under trigger - scary because it detailed the sad death of Lauren Bloomstein. So you weren't scared away. But it is scary, I think.
MARIE ROSE MCCAUSLAND: Yeah, I mean - I almost wanted to read most of the ones that said trigger warning because I wanted to know the scary things that might happen.
MONTAGNE: And five days after her son's birth, Marie did recognize something scary, the symptoms of pre-eclampsia she'd been reading about, swelling and high blood pressure. When an ER doctor did not recognize those symptoms and tried to send her home, she pushed back until she was admitted to the hospital and spent the next 24 hours on a magnesium sulfate drip, a key treatment for the complication.
MCCAUSLAND: I hate feeling like I'm, you know, complaining or being dramatic or something. And I - you know, we had just come home. And I probably would have just wrote it off just so that I could be home with the baby.
MONTAGNE: Kind of toughed it out.
MCCAUSLAND: Yeah. And thank God I didn't because it was pretty bad. I really don't - I don't know if I'd be here. (Laughter) I really don't.
MONTAGNE: Since NPR and ProPublica posted a call-out for childbirth stories, more than 3,000 women have clicked on the category, I Almost Died. And that dramatic number fits a grim reality. According to the CDC, about 65,000 American women do nearly die every year from complications of giving birth. Renee Montagne, NPR News.
(SOUNDBITE OF EDIT'S "LTLP") Transcript provided by NPR, Copyright NPR.