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The original version of this story, which was co-published with NPR, is available here. The version below contains updated links and statistics and has been condensed for clarity.
In 2017, ProPublica and NPR launched a project shedding light on maternal deaths and near-deaths in the U.S. We explored better ways to track and understand preventable deaths, and the intergenerational trauma caused by childbirth complications and chronic racial disparities in who suffers from them. We heard from more than 5,000 people who endured, or watched a loved one endure, life-threatening pregnancy and childbirth complications, often resulting in long-lasting physical and emotional effects.
These people who sent us their stories frequently told us they knew little to nothing beforehand about the potentially fatal complications that they or their loved ones faced. They wanted to help others. So we decided to publish some of their wisdom.
They told us what they wish they had known ahead of their severe complications: How do I get medical professionals to listen? When are changes in my body normal, and when are they a warning? How do I navigate the postpartum period? In the years since, other readers have told us this advice was critical.
Recent data shows maternal deaths, including deaths in the first six weeks after childbirth, rose in the first year of the pandemic. The increase puts the nation’s maternal mortality rate at 23.8 deaths per 100,000 live births in 2020, up from 20.1 deaths in 2019.
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If the U.S. Supreme Court strikes down Roe v. Wade, they’ll do so in a country where pregnancy and childbirth continue to become more dangerous. We’re republishing this advice, in a shortened and easier-to-navigate format, because self-advocacy and community knowledge are important when systems fail.
- Choosing a provider
- Preparing for an emergency
- Paying attention to your symptoms
- After the delivery
- Grappling with the emotional fallout
- Other resources
Choosing a provider
“A lot of data on specific doctors and hospitals can be found publicly. Knowing how your physician and hospital rates as compared to others (cesarean rates, infection rates, readmission rates) can give you valuable insight into how they perform. ‘Liking’ your doctor as a person is nice, but not nearly as important as their and their facility’s culture and track record.”- Kristen Terlizzi, survivor of a 2014 placenta accreta spectrum (a disorder in which the placenta grows into or through the uterine wall) and cofounder of the National Accreta Foundation
“Key pieces of information every woman should know before choosing a hospital are: What are their safety protocols for adverse maternal events? No one likes to think about this while pregnant, and providers will probably tell you that it’s unlikely to happen. But it does happen and it’s good to know that the hospital and providers have practiced for such scenarios and have proper protocols in place.”- Marianne Drexler, survived a hemorrhage and emergency hysterectomy in 2014
“If a birthing center is your choice, discuss what happens in an emergency — how far away is the closest hospital with an ICU? Because a lot of hospitals don’t have them. Another thing many women don’t realize is that not every hospital has an obstetrician there 24/7. Ask your doctors: If they’re not able to be there the whole time you’re in labor, will there be another ob/gyn on site 24 hours a day if something goes wrong?”- Miranda Klassen, survivor of amniotic fluid embolism in 2008 and founder/executive director of the Amniotic Fluid Embolism Foundation
Preparing for an emergency
“A conversation about possible things that could go wrong is prudent to have with your doctor or in one of these childbirth classes. I don’t think that it needs to be done in a way to terrify the new parents, but as a way to provide knowledge. The pregnant woman should be taught warning signs, and know when to speak up so that she can be treated as quickly and accurately as possible.”- Susan Lewis, survived disseminated Intravascular Coagulation (DIC) in 2016
“Always have somebody with you in a medical setting to ask the questions you might not think of and to advocate on your behalf if your ability to communicate is compromised by being in poor health. ... And get emotional support to steel you against the naysayers. It may feel really unnatural or difficult to push back [against doctors and nurses]. Online forums and Facebook groups can be helpful to ensure you’re not losing your mind.”- Eleni Tsigas, survivor of preeclampsia in 1998 and 1999 and chief executive officer of the Preeclampsia Foundation
“In case you ever are unable to respond, someone needs to step in and be your voice! Know as much thorough medical history as possible, and let your spouse or support person know [in depth] your history as well.”- Kristina Landrus, survived a hemorrhage in 2013
“Also be sure your spouse and your other family members, like your parents or siblings, are on the same page about your care. And if you aren’t married, who will be making the decisions on your behalf? You should put things in order, designate the person who will be the decision maker, and give that person power of attorney. Other important things to have are a medical directive or a living will — be sure to bring a copy with you to the hospital. I also recommend packing a journal to record everything that happens.”- Miranda Klassen
“Make a list of your questions and make sure you get the full answer. I went to every appointment the second time around with a notebook. I would apologize for being ‘that patient,’ but I had been through this before and I wasn’t going to be confused again. I wanted to know everything. Honestly, it was as harmful as it was helpful. I knew what I was getting into, which made it much scarier. The first time, my ignorance was bliss. I didn’t realize I almost died until two weeks after I had left the hospital. I didn’t even start researching what had happened to me until months later. The second time I was an advocate for myself. Medical journals and support groups were a part of every single visit. And thankfully, I was in good hands.”- Carrie Anthony, survived placenta accreta and hemorrhage in 2008 and 2015 as well as placenta previa in the second pregnancy
“Write down what each specialty says to you. ... They paraded in on a schedule, checked up on me, asked if I had any questions. I always did, but I regret not writing down what each said each time (along with names!). I got so many different answers regarding how I would be anesthetized, and on the day it all had to happen in an emergency, there were disagreements above me in the OR between the specialists. It was like children arguing on a playground and my life was in danger. Had I kept a more vigilant record of what each specialty reported to me, perhaps prior to the day I could have confronted each with the details that weren’t matching up.”- Megan Moody, survived placenta percreta (when the placenta penetrates through the uterine wall) in 2016
“People should know that they have a right to ask for more time with the doctor or more follow-up if they feel something is not right. The OB-GYNs (at least in Pennsylvania) are so busy and sometimes appointments are quite quick and rushed. Make the doctors slow down and take the time with you.”- Dani Leiman, survived HELLP syndrome (a particularly dangerous variant of preeclampsia) in 2011
“You have a legal right to your medical records throughout pregnancy and anytime afterwards. Get a copy of your lab results each time blood is drawn, and a copy of your prenatal and hospital reports. Ask about concerning or unclear results.”- Eleni Tsigas
Getting your provider to listen
“Understand the system. Ask a nurse or a trusted loved one in the ‘industry’ how it all works. I’ve found that medical professionals are more likely to listen to you if you demonstrate an understanding of their roles and the kind of questions they can/cannot answer. Know your ‘silos.’ Don’t ask an anesthesiologist how they plan on stitching up your cervix. Specialists are often incredibly impatient. You need to get the details out of them regarding their very specific roles.”- Megan Moody
“If your provider tells you, ‘You are pregnant. What you’re experiencing is normal,’ remember — that may be true. [But it’s also true] that preeclampsia can mimic many normal symptoms of pregnancy. Ask, ‘What else could this be?’ Expect a thoughtful answer that includes consideration of ‘differential diagnoses’ — in other words, other conditions that could be causing the same symptoms.”- Eleni Tsigas
“They only listen if the pain is a 10 or higher. Most of us don’t understand what a 10 is. I’d always imagined a 10 would feel like having a limb blown off in combat. When asked to evaluate your pain on a scale of 1 to 10, when you are in your most vulnerable moment, it is very hard to assess this logically, for you and for your partner witnessing your pain. I later saw a pain chart with pictures. A 10 was demonstrated with an illustration of a crying face. You may not actually be shedding tears, but you are most likely crying on the inside in pain, so I suggest to always say a 10. My pain from the brain hemorrhage was probably a 100, but I’m not sure if I even said 10 at the time.”- Emily McLaughlin, survived a postpartum stroke in 2015
“So many women do speak up about the strange pain they have, and a nurse may brush it off as normal without consulting a doctor and running any tests. Be annoying if you must, this is your life. ... Thankfully, I never had to be so assertive. I owe my life to the team of doctors and nurses who acted swiftly and accurately, and I am eternally grateful.”- Susan Lewis
“If you have a hemorrhage, don’t clean up after yourself! Make sure the doctor is fully aware of how much blood you are losing. I had a very nice nurse who was helping to keep me clean and helping to change my (rapidly filling) pads. If the doctor had seen the pools of blood himself, rather than just being told about them, he might not have been so quick to dismiss me.”- Valerie Bradford, survived a hemorrhage in 2016
Paying attention to your symptoms
“I had heard of preeclampsia but I was naïve. [I believed] that it was something women developed who didn’t watch what they ate and didn’t focus on good health prior and/or during pregnancy. I was in great health and shape prior to getting pregnant, during my pregnancy I continued to make good food choices and worked out up until 36 hours before the baby had to be taken. I gained healthy weight and kept my BMI at an optimum number. I thought due to my good health, I was not susceptible to anything and my labor would be easy. So although I had felt bad for 1 1/2 weeks, I chalked it up to the fact that I was almost 8 months into this pregnancy, so you’re not supposed to feel great. … I walked into my doctor’s office that Friday and not one hour later I was in an emergency C-section delivering a baby. I had to fully be put under due to the severity of the HELLP, so I didn’t wake up until the next day.”- Kelli Davis, survived HELLP syndrome in 2016
“Understand that severe, sustained pain is not normal. So many people told me that the final trimester of pregnancy is sooo uncomfortable. It was my first pregnancy, I have a generally high threshold for pain, and my son was breech so I thought his head was causing bad pain under my ribs [when it was really epigastric pain from the HELLP syndrome]. I kept thinking it was normal to be in pain and I let it go until it was almost too late.”- Dani Leiman
“Know the way your blood pressure should be taken. And ask for the results. Politely challenge the technician or nurse if it’s not being done correctly or if they suggest ‘changing positions to get a lower reading.’ Very high blood pressure (anything over 160/110) is a ‘hypertensive crisis’ and requires immediate intervention.”- Eleni Tsigas
“Please ask for a heart monitor for yourself while in labor, not just for the baby. I think if I had one on, seconds or minutes could have been erased from reaction time by the nurses. They were alerted to an issue because the baby’s heart stopped during labor, and while the nurse was checking that machine, my husband noticed I was also non-responsive. That’s when everything happened.”- Kristy Kummer-Pred, survived amniotic fluid embolism and cardiac arrest in 2012
After the delivery
“My swelling in my hands and feet never went away. My uterus hadn’t shrunk. I wasn’t bleeding that bad, but there was a strange odor to it. My breasts were swollen and my milk wasn’t coming in. I was misdiagnosed with mastitis [a painful inflammation of the breast tissue that sometimes occurs when milk ducts become plugged and engorged]. The real problem was that I still had pieces of placenta inside my uterus. Know that your placenta should not come out in multiple pieces. It should come out in one piece. If it is broken apart, demand an ultrasound to ensure the doctors got it all. If you have flu-like symptoms, demand to be seen by a doctor. If you don’t like your doctor, demand another one.”- Brandi Miller, survived placenta accreta and hemorrhage in 2015
“There is a period in the days and weeks after delivery where your blood pressure can escalate and you can have a seizure, stroke, or heart attack, even well after a healthy birth. You should take your own blood pressure at home if your doctor doesn’t tell you to. ... Unfortunately, I went home from [all my postpartum] appointments with my blood pressure so high that I started having a brain hemorrhage. Not one single person ever thought of taking my blood pressure when I was complaining about my discomfort and showing telltale warning signs of [preeclampsia].”- Emily McLaughlin
“The postpartum period is when a lot of pregnancy-related heart problems like cardiomyopathy emerge. If there is still difficulty breathing, fluid buildup in ankles, shortness of breath and you are unable to lie flat on your back, go see a cardiologist ASAP. If you have to go to an emergency room, request to have the following tests performed: echocardiogram (echo) test, ejection fraction test, B-type natriuretic peptides (BNP), EKG test and chest X-ray test. These tests will determine if your heart is failing and will save your life.”- Anner Porter, survivor of peripartum cardiomyopathy in 1992
“Rest as much as possible — for as long as possible. Being in too big a rush to get ‘back to normal’ can exacerbate postpartum health risks. Things that are not normal: heavy bleeding longer than 6 weeks, or bleeding that stops and starts again, not producing milk, fevers, severe pain (especially around incision sites), excessive fatigue, and anxiety/depression. If you don’t feel like yourself, get help.”- Amy Barron Smolinski, a survivor of preeclampsia, postpartum hemorrhage and other complications in three pregnancies in 2006, 2011 and 2012 and executive director of Mom2Mom Global, a breastfeeding support group
“Know that your preexisting health conditions may be impacted by having a baby (hormone changes, sleep deprivation, stress). Record your health and your baby’s in a journal or app to track any changes. Reach out to the nurse or doctor when there are noticeable changes that you have tracked.”- Noelle Garcia, survived placental abruption (placenta separating from the uterine wall during pregnancy) in 2007
“If your hospital discharges you on tons of Motrin or pain killers, be aware that this can mask the warning signs of headache, which is sometimes the only warning sign of preeclampsia coming on postpartum.”- Emily McLaughlin
Grappling with the emotional fallout
“I wish I had known that postpartum PTSD was possible. Most people associate PTSD with the effects of war, but I was diagnosed with PTSD after my traumatic birth and near-death experience. Almost 6 years later, I still experience symptoms sporadically.”- Meagan Raymer, survived severe preeclampsia and HELLP syndrome in 2011
“I recommend therapy with a female therapist specializing in trauma. Honestly, I avoided it for 8 months. I was then in therapy for 12 months. I still have ongoing anxiety ... but I would be in a very bad place (potentially depression and self-harm due to self-blame) were it not for therapy. It was so hard to admit [what was happening]. I started to get a suspicion when I heard an NPR story about a veteran with PTSD. I thought ... that sounds like me. And I started Googling.”- Jessica Rae Hoffman, survived severe sepsis and other complications in 2015
“The emotional constructs our society puts around pregnancy and childbirth make the ideas of severe injury and death taboo. Childbirth is a messy, traumatic experience. ... Many women don’t seek care even when they instinctively believe something is wrong because they’re supposed to ‘be happy.’ Awareness and transparency are so important.”- Leah Soule, survived a hemorrhage in 2015
“I wish I had understood how significant the impact was on my husband. Emotionally, the experience was much more difficult and long-lasting for him than for me, and it continued to affect his relationship with both me and our baby for quite a while, at a time when I didn’t think it was a thing at all.”- Elizabeth Venstra, survived HELLP syndrome in 2014
“I would suggest establishing yourself ahead of time with a doula or midwife that can make postpartum visits to your home, which can promote health even if everything goes smoothly. Many communities have those services available if you can’t afford them. [A doula] wasn’t covered through our insurance, but the social worker at the hospital arranged for someone paid for by [San Diego County] to come and do several checks on me and my son, which was very reassuring to both my husband and me.”- Miranda Klassen
The California Maternal Quality Care Collaborative’s toolkits of protocols for treating life-threatening obstetric complications include infographics, checklists and extensive backup materials. Register on the site for free access. The Alliance for Innovation on Maternal Health’s offers bundles of similar information in a condensed, downloadable form.
The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)’s Health4Mom site has a “Save Your Life” campaign, including a one-page checklist, to help new parents recognize post-birth warning signs. The Institute for Perinatal Quality Improvement offers resources for medical professionals.
Childbirth Connection provides evidence-based information on maternity care.
The Preeclampsia Foundation’s “Wonder Woman” posts put the U.S. maternal mortality numbers in context and suggest more strategies for self-advocacy.
Facebook is a gathering place for thousands of people who have experienced life-threatening complications. Many groups are condition-specific or closed to nonsurvivors. One open group worth checking out: The Unexpected Project.
Some social justice groups advocate to reduce childbirth-related deaths and near-deaths. Many focus on why Black people are disproportionately affected. Those groups include the Black Mamas Matter Alliance, Moms Rising and the National Birth Equity Collective.
For more context, check out “Killing the Black Body: Race, Reproduction, and the Meaning of Liberty” by Dorothy Roberts, which was reissued a few years ago in celebration of its 20th anniversary. The new edition includes reflections on its publication and findings, and on the continued escalation of abortion bans across the country.
For those dealing with complicated medical bills, former ProPublica reporter Marshall Allen offers advice in his book “Never Pay the First Bill: And Other Ways to Fight the Health Care System and Win.”
Help us continue reporting on pregnancy and childbirth. Have you had an experience with prenatal genetic testing? Tell us here. We want to understand more about your interactions with genetic screening providers.
This story was originally published by ProPublica.