How We Collected Nearly 5,000 Stories of Maternal Harm

by Adriana Gallardo

About a year ago, ProPublica and NPR launched Lost Mothers, a project investigating the dangers of pregnancy and childbirth in the U.S. We soon learned that the U.S. was one of the most dangerous countries in the developed world to give birth. About 700 to 900 women die each year from pregnancy- or childbirth-related complications. For each woman who dies, more than 70 nearly die.

We knew the statistics. Maternal advocacy organizations and other sources had provided names of some expectant and new mothers who had died, including Lauren Bloomstein, a neonatal nurse in New Jersey. But we still didn't have enough of the human stories we needed for this project. So we set out to find women and families willing to share intimate experiences. To do that, we published a request: Do you know someone who died or nearly died in childbirth? Help us investigate.

The form asked users about the type of maternal health complication that occurred, about follow-up care, and about lingering long-term consequences. Within a few days of publishing our maternal health questionnaire, we received about 2,500 responses. Today, we have almost 5,000. We've had submissions come in from all 50 states, Washington, D.C., and Puerto Rico. We have stories of maternal deaths dating as far back as 1920 and as recent as December 2017. The people who answered that request helped fuel much of the Lost Mothers project. And we're going to tell you how we did it.

How We Got to 5,000

A key reason we elicited 2,500 submissions so quickly was NPR's reach - it has 6.3 million Facebook followers. NPR posted the questionnaire to its Facebook page the day our questionnaire published. But we wanted to reach more than just an NPR or ProPublica audience. That's where the shoe-leather social journalism started.

Data on maternal deaths is so inadequate that the federal government no longer publishes an official death rate. The estimated 700 to 900 women who die each year largely go unnamed. So sourcing via social media played an important role. To compile our list of women who died from pregnancy- and childbirth-related causes, ProPublica reporter Nina Martin scoured social media - primarily public posts on Facebook and Twitter, and the crowdfunding sites GoFundMe and YouCaring. We then verified the women's basic information using obituaries and public records. We worked with a team of graduate-student journalists from New York University to reach out to family members for additional information. In many cases, persuading family members to participate in our project was hard. They were reluctant to share their personal stories and details. But after making contact and explaining the project, we would share the questionnaire with them directly. Many added their stories to our database even if they felt too traumatized to speak with us.

We've also had success in the past finding communities on Facebook for various investigations. We approached this one very similarly. We teamed up with CUNY's Social Journalism graduate class to research and contact hundreds of Facebook groups - everything from baby photographers to breastfeeding affinity groups to local chapters of the March of Dimes. The goal here was to be proactive in our engagement and put our work directly in front of the members of these groups. While this effort didn't produce a deluge of submissions, it helped us understand which groups were and weren't interested in this project.

We also sought out partners that we believed reached a different audiences than ours and in different parts of the country. We connected with Cosmopolitan.com, The Root, The Texas Tribune, and, after translating the questionnaire into Spanish, Univision.com. Each site embedded the form and asked its audience to help us investigate. Almost 200 entries came in via these partnerships.

While all this work was important in connecting with people concerned about the issue, the best way to increase awareness about the questionnaire was a fresh article. With each story that we published, new entries poured in. The link to the questionnaire appeared in the text. And we made sure to close each story with a request to readers to share the article or fill out the questionnaire.

Who Participated

The largest group represented in the database were women who suffered life-threatening complication of pregnancy or childbirth. Of the nearly 5,000 responses, more than 4,000 came from this group. The Centers for Disease Control and Prevention refers to these cases as severe maternal morbidity or near-misses.

Of the people who reported nearly dying, almost 700 came from three states: Texas, New York and Illinois. The vast majority nationwide were white. There were 247 Latinas who reported near-misses and 217 African-American women.

We also heard from a lot of people who just wanted to share information about a death, even if they weren't related to or even friends with the victim. When we asked, "What is your relationship to the mother?", responses included the following:

• Went to high school together " not really friends
• Husband's work colleague
• [Live in] same town
• She was my gastroenterologist
• Friend of a friend, I didn't know her personally
• Worked with her husband
• Acquaintance
• RN caring for her babies in the NICU

What this tells us is that many people who have barely encountered someone who died or almost died are still profoundly affected and need an outlet to share these stories.

The Gap We Noticed and Tried to Fill

While we were excited to see this project resonate, we also quickly realized we had a gap.

Of the 2,500 stories submitted in the first week, fewer than 75 came from black mothers. Yet black mothers die at three to four times the rate of white mothers. So we realized it was important to devote special attention to reaching the black community. Using fliers and in-person presentations, we spread the word among black-serving maternal groups and at gatherings of women of color.

We also wrote articles about racial disparities. We explored what race and birth mean in America, how neither class nor income protects black women from dying in pregnancy and childbirth, and why birth complications in black families have a generational impact.

Of all of the messages we targeted to black mothers in the database, the one that resonated the most was asking if they wanted to talk with their own mothers or daughters about their personal experiences of childbirth.

Dear Heather -

Thank you for sharing your story with ProPublica. Your contribution has already enriched our project about pregnancy and childbirth-related deaths and severe complications in the US. We're writing to you now because we're working on a series of pieces about maternal health in the Black community and we'd like to include your story - and your family's - in our coverage.

Maternal health can be a hard topic to talk about, and we want to make it easier -by turning it into a group project. We're interested in speaking with Black mothers and daughters, or sisters, or other pairs of relatives from the same family. Think StoryCorps. We think these interviews and conversations between women will help to uncover what has and has not changed about maternal health and motherhood in the Black community, and how care can differ depending on where you live, what type of nurse or doctor you see, and so forth.

This email spurred dozens of messages from black mothers seeking to explore this question with us and with their families. We recorded five conversations between pairs of black women. In each case, at least one of the women had nearly died in childbirth. We provided a set of questions, but each pair guided its own interview and shared what statistics can't quantify - the collateral damage of maternal harm. The conversations were emotional, therapeutic and enlightening. We've encouraged more families to engage in their own discussions using our guide.

The Callout's Fallout

The questionnaire was just the start of a relationship between reporters and the women who shared their stories. We asked them questions, sent them our articles, even ran ideas by them.

Their insights contributed significantly to the series. Here are a few examples:

• An advice piece emerged from ideas shared by hundreds of women on how to improve maternal care.
• The Lost Mothers gallery identified 134 women who died in 2016. The questionnaire helped in collecting details and family photos from loved ones.
• Nearly all the women in our story about near-misses found us first through our questionnaire.
• We portrayed racial disparities in maternal care through conversations between black women and their families.

What's Next?

We encourage other communities and newsrooms to continue contributing to this conversation. Here are a few tips from our reporting team:

• Maternal deaths are human interest stories - but with an added dimension. Because many of them are preventable, they reflect a public health crisis and need to be examined as such. Never forget to ask: What happened at the hospital? What protocols were in place to handle an emergency?
• Work extra hard to include women of color - and allow extra time to elicit and incorporate their stories.
• Reach out to local near-miss survivors to broaden your understanding of provider-level issues and problems.

For those who have a story to share, fill out our questionnaire or get in touch at maternal@propublica.org.

If you'd like to host an event about maternal health, check out our Lost Mothers Event Toolkit.