Lost Mothers
October 22, 2017 7:56 PM Subscribe
“The U.S. has the highest rate of maternal mortality in the developed world. Yet these deaths of women from causes related to pregnancy or childbirth are almost invisible.
We were struck by how many perished in the postpartum period, by the number of heart-related deaths, by the contributing role sometimes played by severe depression and mood disorders — and by the many missed opportunities to save lives.”
ProPublica and NPR have spent the last few months searching social media and other sources for mothers who died, trying to understand what happened to them and why.
We were struck by how many perished in the postpartum period, by the number of heart-related deaths, by the contributing role sometimes played by severe depression and mood disorders — and by the many missed opportunities to save lives.”
ProPublica and NPR have spent the last few months searching social media and other sources for mothers who died, trying to understand what happened to them and why.
This article is brutal and necessary.
posted by vorpal bunny at 8:18 PM on October 22, 2017 [3 favorites]
posted by vorpal bunny at 8:18 PM on October 22, 2017 [3 favorites]
It's worth thinking about what you're signifying with "developed world", since apparently it's not low maternal mortality.
posted by dilaudid at 8:49 PM on October 22, 2017 [22 favorites]
posted by dilaudid at 8:49 PM on October 22, 2017 [22 favorites]
I know not all of these come down to doctors ignoring women's symptoms but enough of them did for me. Doctors please stop ignoring women's symptoms.
posted by bleep at 11:54 PM on October 22, 2017 [5 favorites]
posted by bleep at 11:54 PM on October 22, 2017 [5 favorites]
Good, this was so sad. Only maternal mortality I've been close to was a fellow r/babybumps poster who died from a vbac complication a few weeks before I gave birth. Her husband posted, devastated, to let us know. I never found out her real name.
Npr and propublica are doing a valuable public service. Thanks for sharing it.
posted by potrzebie at 12:57 AM on October 23, 2017
Npr and propublica are doing a valuable public service. Thanks for sharing it.
posted by potrzebie at 12:57 AM on October 23, 2017
Meant to include this bit as the more inside:
“What we did:
To compile our list of women who died from pregnancy- and childbirth-related causes, ProPublica scoured social media — primarily public posts on Facebook and Twitter and the crowdfunding sites GoFundMe and YouCaring — and then verified the women’s basic information using obituaries and public records. Other names came to us through patient advocacy organizations and through a call-out shared by ProPublica and NPR. We identified more than 450 deaths since 2011, including 134 in 2016. We then 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. As we learned, loved ones are often too consumed with grief, and sometimes with guilt, to tell their stories. They may feel a social stigma and prefer to keep the circumstances to themselves. Or they’re counseled by lawyers to stay silent. Although many women’s photographs were widely distributed on GoFundMe and other public sites, we decided only to publish pictures of women whose family members gave their permission or whose stories had been previously told in news articles.
How we defined a maternal death:
We used the same definition as the Centers for Disease Control and Prevention: “the death of a woman during pregnancy or within one year of the end of pregnancy from a pregnancy complication, a chain of events initiated by pregnancy, or the aggravation of an unrelated condition by the physiologic effects of pregnancy.”
Who we didn’t find:
While social media allowed us to find many women whose stories would have been lost in the past, this method falls short at capturing women who live and die on the margins, including homeless women and undocumented immigrants. Black expectant and new mothers, who die much more often than whites, are less likely to have their stories told on social media. It also can be difficult to determine whether the deaths of women in the later postpartum period are related to childbirth.”
posted by Grandysaur at 2:52 AM on October 23, 2017 [9 favorites]
“What we did:
To compile our list of women who died from pregnancy- and childbirth-related causes, ProPublica scoured social media — primarily public posts on Facebook and Twitter and the crowdfunding sites GoFundMe and YouCaring — and then verified the women’s basic information using obituaries and public records. Other names came to us through patient advocacy organizations and through a call-out shared by ProPublica and NPR. We identified more than 450 deaths since 2011, including 134 in 2016. We then 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. As we learned, loved ones are often too consumed with grief, and sometimes with guilt, to tell their stories. They may feel a social stigma and prefer to keep the circumstances to themselves. Or they’re counseled by lawyers to stay silent. Although many women’s photographs were widely distributed on GoFundMe and other public sites, we decided only to publish pictures of women whose family members gave their permission or whose stories had been previously told in news articles.
How we defined a maternal death:
We used the same definition as the Centers for Disease Control and Prevention: “the death of a woman during pregnancy or within one year of the end of pregnancy from a pregnancy complication, a chain of events initiated by pregnancy, or the aggravation of an unrelated condition by the physiologic effects of pregnancy.”
Who we didn’t find:
While social media allowed us to find many women whose stories would have been lost in the past, this method falls short at capturing women who live and die on the margins, including homeless women and undocumented immigrants. Black expectant and new mothers, who die much more often than whites, are less likely to have their stories told on social media. It also can be difficult to determine whether the deaths of women in the later postpartum period are related to childbirth.”
posted by Grandysaur at 2:52 AM on October 23, 2017 [9 favorites]
It's really hard to read this, all these unnecessary tragedies. First I read the longer, side-barred story of Lauren Bloomstein, and it really hit me how much of the malpractice here stems directly from the absurd structure of the US healthcare system. Where else would focus on saving the babies lead to lack of focus on the mothers, as described by the obstetricians in the article? And all that while still not meeting the the infant mortality rate of other Western democracies. Where else would fear of litigation prevent the gathering of data and knowledge for improvement of practice?
Also, if you want to improve mortality rates for both mothers and babies across class and race, midwives and specialized nurses are the way a lot of countries have gone. There is an intersection of experience and evidence-based best practice that can lead to vastly improved results for much lower costs, and that lies with the midwife-nurse teams, not with the obstetricians. But again, the countries that have reached good results have national programs for this, not patched together private and public systems.
posted by mumimor at 3:22 AM on October 23, 2017 [4 favorites]
Also, if you want to improve mortality rates for both mothers and babies across class and race, midwives and specialized nurses are the way a lot of countries have gone. There is an intersection of experience and evidence-based best practice that can lead to vastly improved results for much lower costs, and that lies with the midwife-nurse teams, not with the obstetricians. But again, the countries that have reached good results have national programs for this, not patched together private and public systems.
posted by mumimor at 3:22 AM on October 23, 2017 [4 favorites]
America hates women. I mean, really, really hates women.
posted by Weftage at 5:54 AM on October 23, 2017 [32 favorites]
posted by Weftage at 5:54 AM on October 23, 2017 [32 favorites]
This reminded me of a Vox article from a few months ago about California trying to reverse the trend.
posted by borkencode at 6:30 AM on October 23, 2017 [1 favorite]
posted by borkencode at 6:30 AM on October 23, 2017 [1 favorite]
39 weeks pregnant today with my second and made the mistake of reading a few of these. I've already been terrified of eclampsia after that article a couple of months ago about the woman who died after childbirth even though her husband was a doctor who recognized the symptoms and still felt bullied by the medical staff at the hospital into ignoring the symptoms. As much as there's emphasis on childbirth not being a "medical event" and trying to focus on lessening hospital interventions/etc, there is a lot that can happen that IS medical and that part is too often ignored when we as a society think about pregnancy and childbirth. Shudder.
posted by olinerd at 7:05 AM on October 23, 2017 [1 favorite]
posted by olinerd at 7:05 AM on October 23, 2017 [1 favorite]
I should not be reading this article (due in December).
posted by prefpara at 7:06 AM on October 23, 2017
posted by prefpara at 7:06 AM on October 23, 2017
Absolutely: America hates women. I mean, really, really hates women. especially when forced to think about their having babies, or not having babies, or raising babies, or not raising babies.
posted by crush at 8:04 AM on October 23, 2017 [5 favorites]
posted by crush at 8:04 AM on October 23, 2017 [5 favorites]
I should not be reading this article (due in December).
I'm due next April. I know what you mean. I did freak out a little when I read the article, but if you think about it, it's a treasure that other women and their families have shared with us. The information from this article could save your life!
Many of the deaths on the list were preventable. I am using this research to put together a list of symptoms I need to pay attention to around birth time (unusual swelling, symptoms of a heart attack, etc.). Based on my experience with US hospitals and based on advice from my brother in law (an MD), the squeaky (and specific) wheel gets the oil.
This also reminded me that I need to have a conversation with my husband re: being assertive with medical staff, things to look out for in case I can't communicate my symptoms clearly, and if the worst happens, DNRs and advance directives.
I am thankful to the people who gathered this research, the women whose lives ended so tragically, and their families, who were generous enough to share their grief.
posted by Tarumba at 9:07 AM on October 23, 2017 [9 favorites]
I'm due next April. I know what you mean. I did freak out a little when I read the article, but if you think about it, it's a treasure that other women and their families have shared with us. The information from this article could save your life!
Many of the deaths on the list were preventable. I am using this research to put together a list of symptoms I need to pay attention to around birth time (unusual swelling, symptoms of a heart attack, etc.). Based on my experience with US hospitals and based on advice from my brother in law (an MD), the squeaky (and specific) wheel gets the oil.
This also reminded me that I need to have a conversation with my husband re: being assertive with medical staff, things to look out for in case I can't communicate my symptoms clearly, and if the worst happens, DNRs and advance directives.
I am thankful to the people who gathered this research, the women whose lives ended so tragically, and their families, who were generous enough to share their grief.
posted by Tarumba at 9:07 AM on October 23, 2017 [9 favorites]
This is a follow-up article. The first one was published in May: "The Last Person You’d Expect to Die in Childbirth: The U.S. has the worst rate of maternal deaths in the developed world, and 60 percent are preventable. The death of Lauren Bloomstein, a neonatal nurse, in the hospital where she worked illustrates a profound disparity: The health care system focuses on babies but often ignores their mothers."
posted by Mr.Know-it-some at 9:22 AM on October 23, 2017 [2 favorites]
posted by Mr.Know-it-some at 9:22 AM on October 23, 2017 [2 favorites]
Reading about this stuff makes me feel less embarrassed about a visit I made to my OB a couple weeks or so after giving birth. I knew that some amount of bleeding and soreness was normal, but I wasn't sure if what I was feeling was in the normal range. My mother basically frog-marched me to the clinic and insisted that I see my OB, despite my telling her that the norm was for the first postpartum appointment to be at 6 weeks, unless you felt something was wrong. Six weeks! That's ridiculous she said. All kinds of infections could have have started well before then. And how do you have any way of knowing what's normal or not? This country doesn't pay any attention to its mothers after childbirth. So I went and the doctor inspected my stitches and said they were healing perfectly and told me to come back at six weeks. And I went home feeling rather sheepish for making a fuss about nothing. But after reading this, fuck that. It is ridiculous that while my baby was checked almost every day for that two week period (mainly because he wasn't gaining weight as he should have), I was basically just asked a perfunctory question at the end of each pediatrician appointment.
posted by peacheater at 9:26 AM on October 23, 2017 [18 favorites]
posted by peacheater at 9:26 AM on October 23, 2017 [18 favorites]
This also reminded me that I need to have a conversation with my husband re: being assertive with medical staff, things to look out for in case I can't communicate my symptoms clearly, and if the worst happens, DNRs and advance directives
Sorry for the slight derail here, but this is exactly the reason why I had someone else in the room with us (in our case, a clear-headed family member, but it makes a strong case for doulas). My husband was already worried about my health, already worried about the baby's health, and then just overcome with emotion regarding becoming a father. If something had gone off the rails he would not have been able to process that, listen to his/our options, and make a logical, non-emotional decision. I mean, he's my husband so I knew this and planned for it well in advance, and discussed all of my concerns and wishes with the other party, gave them a copy of my advance directive, etc. This all just makes it really clear that putting a new mother or mother & father alone in a room in an emotional situation is less than ideal - people need support in these situations.
And they need support at home afterwards. Here in Los Angeles there are so many people who moved here for work and have no family nearby to help. The FB mom community is strong for that reason with new parents asking to ton of questions, but it doesn't make up for a third party laying eyes on you and asking after the welfare of each member of the family.
posted by vignettist at 9:35 AM on October 23, 2017 [4 favorites]
Sorry for the slight derail here, but this is exactly the reason why I had someone else in the room with us (in our case, a clear-headed family member, but it makes a strong case for doulas). My husband was already worried about my health, already worried about the baby's health, and then just overcome with emotion regarding becoming a father. If something had gone off the rails he would not have been able to process that, listen to his/our options, and make a logical, non-emotional decision. I mean, he's my husband so I knew this and planned for it well in advance, and discussed all of my concerns and wishes with the other party, gave them a copy of my advance directive, etc. This all just makes it really clear that putting a new mother or mother & father alone in a room in an emotional situation is less than ideal - people need support in these situations.
And they need support at home afterwards. Here in Los Angeles there are so many people who moved here for work and have no family nearby to help. The FB mom community is strong for that reason with new parents asking to ton of questions, but it doesn't make up for a third party laying eyes on you and asking after the welfare of each member of the family.
posted by vignettist at 9:35 AM on October 23, 2017 [4 favorites]
It's worth thinking about what you're signifying with "developed world",
1) High standard of living - plenty of food, plenty of luxury food, comfortable and safe houses, 1-2 people per room on average, a car for almost every family, running water, refrigeration, indoor plumbing, indoor stoves, heaters/air conditioning to avoid seasonal weather, near-universal education (can quibble about the quality elsewhere; most kids are literate), entertainment of many sorts on tap.
2) A very strong military with a presence in nearly 150 other countries, guaranteeing that the economic situation that creates #1 will continue.
None of that requires any particular care be provided for the underclasses, however they're defined. And in the US, "female" is an underclass.
posted by ErisLordFreedom at 9:37 AM on October 23, 2017 [3 favorites]
1) High standard of living - plenty of food, plenty of luxury food, comfortable and safe houses, 1-2 people per room on average, a car for almost every family, running water, refrigeration, indoor plumbing, indoor stoves, heaters/air conditioning to avoid seasonal weather, near-universal education (can quibble about the quality elsewhere; most kids are literate), entertainment of many sorts on tap.
2) A very strong military with a presence in nearly 150 other countries, guaranteeing that the economic situation that creates #1 will continue.
None of that requires any particular care be provided for the underclasses, however they're defined. And in the US, "female" is an underclass.
posted by ErisLordFreedom at 9:37 AM on October 23, 2017 [3 favorites]
It's worth thinking about what you're signifying with "developed world", since apparently it's not low maternal mortality.
Although the rate in the U.S. is unconscionably high (24 or 14 per 100,000, depending on the source), it's still much lower than in countries like Sudan (311), Sierra Leone (1,360), and Nicaragua (150), to pick a few at random.
posted by Mr.Know-it-some at 10:29 AM on October 23, 2017
Although the rate in the U.S. is unconscionably high (24 or 14 per 100,000, depending on the source), it's still much lower than in countries like Sudan (311), Sierra Leone (1,360), and Nicaragua (150), to pick a few at random.
posted by Mr.Know-it-some at 10:29 AM on October 23, 2017
Tarumba, I am also due in April and almost didn't read this article, but did after reading your comment, so thank you. It's terrifying and heartbreaking. Again. As I've said every other time an article from this series was posted, it doesn't have to be like this. If only we didn't hate women quite so much. If only we devoted as much research money to this as we do to erectile dysfunction.
Borkencode, I'm familiar with the work in CA for professional reasons and have spoken with one of the leaders of the team leading the effort there. One of my big takeways on why it has been so effective is that almost every woman in CA gets prenatal care - that alone has an impact on maternal mortality and morbidity.
posted by john_snow at 11:30 AM on October 23, 2017
Borkencode, I'm familiar with the work in CA for professional reasons and have spoken with one of the leaders of the team leading the effort there. One of my big takeways on why it has been so effective is that almost every woman in CA gets prenatal care - that alone has an impact on maternal mortality and morbidity.
posted by john_snow at 11:30 AM on October 23, 2017
I find this utterly shocking; the deaths which are solely due to not being able to afford healthcare are heartbreaking. But the fact that no-one is even properly looking at why this happens - I seriously can only understand that if I accept that the USA hates women, and hates them more than any other large economy. The UK has had regular, ongoing surveillance and reporting on maternal mortality since 1952 (starting with England only, then expanding into other areas). The Confidential Enquiry into Maternal Deaths produces regular recommendations which make their way into clinical practice. This is not to say that more cannot be done; it's recognised that there aren't enough mother and baby psychiatric beds, for example. The last report highlights maternal deaths from cardiovascular causes, which also show up in the NPR report.
posted by Vortisaur at 12:11 PM on October 23, 2017 [4 favorites]
posted by Vortisaur at 12:11 PM on October 23, 2017 [4 favorites]
More from the series: How Many American Women Die From Causes Related to Pregnancy or Childbirth? No One Knows.
It's like every other country with some grip on governance are thinking reproductive health is important for the future of our society, at every step. Why not the US?
Reading the comments on all the articles (some of them are interesting), I noticed that apart from trying to fudge the stats, the conservative/racist argument is that countries who have managed to bring down the risks for mother and child are less diverse than the US. Obviously, this doesn't apply to present day UK, the Netherlands or France. But the other thing is something I've brought up in other welfare discussions here on the blue (for you all to tell your racist uncles): when the Scandinavian countries started building their welfare systems, they were not homogenous mono-cultural nations. There were huge cultural divides between different groups, between rural and urban areas, and between different ethnic groups (look at the struggles of the Sami people, even up to today).
posted by mumimor at 12:37 PM on October 23, 2017
It's like every other country with some grip on governance are thinking reproductive health is important for the future of our society, at every step. Why not the US?
Reading the comments on all the articles (some of them are interesting), I noticed that apart from trying to fudge the stats, the conservative/racist argument is that countries who have managed to bring down the risks for mother and child are less diverse than the US. Obviously, this doesn't apply to present day UK, the Netherlands or France. But the other thing is something I've brought up in other welfare discussions here on the blue (for you all to tell your racist uncles): when the Scandinavian countries started building their welfare systems, they were not homogenous mono-cultural nations. There were huge cultural divides between different groups, between rural and urban areas, and between different ethnic groups (look at the struggles of the Sami people, even up to today).
posted by mumimor at 12:37 PM on October 23, 2017
"She began having panic attacks. “I’ve heard it described that it’s like you’re in a jetliner and you feel like the jetliner’s going down,” Eric said. The attacks were so bad he took her to the emergency room a couple of times, but the medical system “is just not equipped to handle that type of emergency.”
Ain't that the truth.
posted by serena15221 at 1:14 PM on October 23, 2017 [1 favorite]
Ain't that the truth.
posted by serena15221 at 1:14 PM on October 23, 2017 [1 favorite]
Please check out (and support, if you can) The Jane Crow Project.
posted by BeBoth at 2:17 PM on October 23, 2017 [3 favorites]
posted by BeBoth at 2:17 PM on October 23, 2017 [3 favorites]
I still don't know all the details about my mother's death--caused during my birth. There was a liver haemorrhage, and a complicated birth, I wasn't breathing. Just a few days later, she was gone.
It's been over thirty years, and it's a fact of life -- my mother passed away during childbirth -- but whenever I mention this to people the reaction is always, always, always "That still happens?"
Yes. It still happens.
posted by PearlRose at 8:47 AM on October 24, 2017 [3 favorites]
It's been over thirty years, and it's a fact of life -- my mother passed away during childbirth -- but whenever I mention this to people the reaction is always, always, always "That still happens?"
Yes. It still happens.
posted by PearlRose at 8:47 AM on October 24, 2017 [3 favorites]
There’s another aspect of maternal death that is hardly discussed at all. Intimate partner violence. The two most dangerous things a woman can do in a relationship are 1) leave and 2) become pregnant. Intimate partner violence is, by some measures the leading cause of death for pregnant women.
America hates women, indeed.
I am so tired.
posted by bilabial at 11:07 AM on October 25, 2017 [4 favorites]
America hates women, indeed.
I am so tired.
posted by bilabial at 11:07 AM on October 25, 2017 [4 favorites]
Intimate partner violence.
Our hospital scores pretty well on whatever score sheet is used to rate whether a hospital is mother & baby-friendly (golden hour, encouraging bf, etc). I do distinctly remember being pulled into another room away from my spouse for "a weight check" where I was asked if domestic violence was a concern, either before I'd arrived or when I would go home. It wasn't a concern for me but I remember thanking the nurse for asking. Obviously a long way to go but at least it's getting on the radar. Although, I do not remember ever having been asked this question in the 40 weeks prior to that day.
posted by vignettist at 11:03 PM on October 25, 2017
Our hospital scores pretty well on whatever score sheet is used to rate whether a hospital is mother & baby-friendly (golden hour, encouraging bf, etc). I do distinctly remember being pulled into another room away from my spouse for "a weight check" where I was asked if domestic violence was a concern, either before I'd arrived or when I would go home. It wasn't a concern for me but I remember thanking the nurse for asking. Obviously a long way to go but at least it's getting on the radar. Although, I do not remember ever having been asked this question in the 40 weeks prior to that day.
posted by vignettist at 11:03 PM on October 25, 2017
What's Killing America's New Mothers?
Determining exactly why so many American mothers are dying of, or suffering through, pregnancy is a gargantuan public-health puzzle. Through the course of reporting this story, it quickly became apparent that there is no single reason, but instead a complex brew of factors that, together, point to deep-rooted, systemic problems that run through the entire social and health care system of the country. Gender, class, race—and across all, a fragmented, mainly private health system—conspire to work against maternal health. In many ways, it’s a litmus test of the health of health care in the US.posted by the man of twists and turns at 11:01 PM on October 30, 2017
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