By the time Christy Johnson learned she was pregnant with her third child, she and her husband thought nothing could surprise them.
“We feel like pros at this point,” said Johnson, a 35-year-old stay-at-home mother of three in Leeds, Ala. “We’ll just have the baby and bring her home.”
But in the days after they brought their new daughter home from the hospital, something didn’t feel right. The lower half of Johnson’s body was weirdly swollen.
“I also had some pain in my neck that I brought up to my nurse the day of discharge from the hospital,” Johnson said. “She said it was probably from sleeping in the hospital bed, a crick in my neck.
“In hindsight, those two things, the swelling and the neck pain, would mean a lot more.”
Less than a week after she came home from the hospital, Johnson’s blood pressure shot up. The medication her doctor prescribed didn’t seem to be working. She called her obstetrician’s office again, and said the nurse told her to take a pain pill and lay down in bed.
Less than 30 minutes later, the first seizure hit.
“I felt like I was losing control of my body,” she said. “I could feel my eyes open wider and wider, and I couldn’t close them.
“All I could do was yell ‘help.’ That’s the last thing I remember for the next 18 hours.”
Life or death
In 2017, the same year Christy Johnson nearly died from a pregnancy-induced blood pressure condition called eclampsia, Alabama recorded its highest-ever number of deaths related to childbirth and pregnancy complications.
For some women, becoming a mother can turn into a life-or-death situation.
American women die at a higher rate from pregnancy and childbirth than women in any other developed country. The United States is one of the only countries where the maternal mortality rate is rising.
But it doesn’t have to be this way. Most experts say more than half of those deaths and near-deaths are preventable.
These deaths, and the near-misses like Christy Johnson’s, expose the places where our healthcare system is broken. They call our attention to the life-threatening conditions that often get blamed on the mothers themselves.
“When a mom dies, it is such a tragic event that impacts not only the baby but a whole family, and it’s a reflection on the quality of healthcare here in our state,” said Dr. Grace Thomas, assistant state health officer for family services at the Alabama Department of Public Health.
“It’s a failure of our healthcare system when that happens. We’ve got to do better.”
Unreliable numbers
Officially, 41 women died from pregnancy or childbirth complications in Alabama in 2017, the most recent year available. That’s according to data reported by the state to the national vital statistics system and the Centers for Disease Control.
Alabama had the second-worst maternal death rate in the nation that year, behind Louisiana.
But the numbers aren’t reliable.
They come from death certificate data, which has been shown to both overreport and underreport the number of women who die from childbirth and pregnancy complications, said Dr. David Goodman, who leads the maternal health team at the U.S. Centers for Disease Control and Prevention’s division of reproductive health.
“We do not currently recommend using death certificate information alone for reporting maternal death,” said Goodman, “because of the errors related to the check-boxes (on death certificates).”
Just a few years ago, Alabama’s official maternal death count was in the single digits. Then Alabama adopted a new death certificate – one of the last states to do so – that included boxes that could be checked if the woman who died had been pregnant.
In the years that followed, the maternal deaths shot up: 12 in 2015, then 35 in 2016, then 41 in 2017.
“We’ve seen this in other states, after the new death certificate is implemented, you get an increase in identification of real maternal deaths,” said Goodman, “but also errors.”
The real problem is that most states are just beginning to reexamine how they count maternal deaths - and how much we really know about what kills our mothers.
Alabama’s maternal deaths “might be higher than previously thought,” said Dr. Sara Mazzoni, associate professor in the department of obstetrics and gynecology and maternal-fetal medicine at the University of Alabama at Birmingham.
“We’re just now, as a state, figuring out where we stand.”
Alabama hasn't investigated its maternal deaths in the past. For nine states that do, here are the main causes they found for what kills mothers in pregnancy and childbirth.
Near-misses
Alabama does not keep track of its near-misses.
Nationally, for every woman who dies from childbirth or pregnancy complications, there are as many as 100 women who face life-threatening pregnancy and childbirth complications, according to the American College of Obstetricians and Gynecologists.
And nearly two-thirds of Alabama mothers reported having some kind of medical problem during pregnancy, according to Alabama’s Pregnancy Risk Assessment Monitoring System, a CDC-based survey of pregnancy-related experiences in the United States.
While maternal death numbers are unreliable and Alabama doesn’t track near-death pregnancy complications, we do have stats on some of the health problems that make being pregnant more dangerous.
Those numbers aren’t good.
Alabama has some of the highest rates in the nation of chronic conditions like heart disease and diabetes and obesity that endanger pregnant women. The state ranks 46th in the nation in women’s and children’s health, according to the United Health Foundation.
Alabama hospitals rank 47th in maternity care and infant feeding, according to the CDC’s National Survey of Maternity Practices in Infant Nutrition and Care.
Alabama’s babies die at higher rates than nearly every other state, and it’s been that way for decades.
What’s killing mothers?
About half of all pregnancy-related deaths in America are caused by hemorrhage, cardiovascular and heart conditions, and infection, according to a report based on data from nine states – including Georgia and South Carolina – that investigate all their maternal deaths.
But the underlying causes of death tend to vary with the race of the mother.
Black mothers died most often from heart conditions and blood pressure complications like preeclampsia and eclampsia.
For white mothers, the most common underlying causes were heart conditions, hemorrhage, infection and mental health problems.
TRUSSVILLE, AL – MAY 22, 2019: Charity Moore, 28, gets her two year-old son, Declan Thompson (right), and her younger sister Kaelynn Turner (left), ready for the day while preparing to go to work as a Public Health Dispatcher for the City of Homewood. Moore’s son Declan was born by cesarean section at St. Vincent’s hospital in Birmingham.
A heavier burden
Charity Moore, a 28-year-old Birmingham-area mom, called her first pregnancy “picture-perfect.” She ran two miles nearly every morning and ate a vegan diet.
But at work one day, she realized something didn’t feel right.
Moore, who is black, checked her blood pressure and it was stroke-level high, she said. She rushed to the hospital.
Her son was born the next day, six weeks early, via an emergency c-section. He spent two weeks in intensive care. She was so sick due to the high blood pressure that she rarely got to visit him, she said.
“I felt like everything I’d done was in vain,” she said. “Everything was perfect, and it still didn’t matter.”
Nationally, black women die from pregnancy and childbirth complications at a rate three to four times higher than white women. And black women who earn higher incomes still die at higher rates than white women of the same economic background.
Moore’s experience led her to advocate for other mothers. She became a doula, or birth advocate, and co-founded Chocolate Milk Mommies, a breastfeeding support group for black mothers that’s based in Birmingham.
“We know that black women are much more likely to die in childbirth,” said Mazzoni, the UAB professor, who is also the obstetrical lead for Alabama’s Perinatal Quality Collaborative. “We know black babies are more likely to die than white babies. But we don’t understand the why, and I don’t think we’ve done enough to address the issue adequately,”
Studies have shown that problems like racial stereotyping and bias from healthcare providers contribute to the gaping difference in maternal health between black and white women.
“The quality of (health)care is one of the issues,” Thomas said. “In addition, we’ve got the effects of structural racism and unconscious biases, and then chronic conditions. Those are all issues we’ve got to address.”
Lack of options
Where a mother lives can also affect her birth outcomes.
Fewer than half of Alabama counties now have a hospital with obstetrical services.
And as Alabama’s rural hospitals continue to close, obstetricians and hospitals are farther and farther away from some of the mothers they serve.
That scarcity of options for care can leave some women with no choice but to remain with a doctor or at a hospital where they don’t feel they’re taken seriously when they say something is wrong.
Lauren DouglasLauren Douglas, 28, began experiencing abdominal pain and running a high fever about a week after she brought her new baby home in November 2016.
Lauren Douglas, a 28-year-old mother from Dothan, began experiencing abdominal pain and running a high fever about a week after she brought her new baby home in November 2016.
“I kept calling my doctor, and he kept telling me my body was healing, it’s normal,” Douglas said.
It wasn’t until her husband talked to the doctor and expressed his concern that the doctor suggested she might be facing something more serious and that she should go to the ER, she said.
“I think that was the point when the doctor started taking it seriously,” she said. “I’d kind of got the feeling they thought I was being a dramatic first-time mom.”
At the ER, doctors found an abscess in her abdomen that was likely the result of infection, and she was diagnosed with extreme dehydration. She was in the hospital for more than a week, separated from her new baby.
“It’s unfortunate, but I think women need to be as loud as possible if something seems wrong postpartum,” Douglas said.
“It could literally be the loss of your own life, the loss of your child, if you’re not loud enough.”
Mostly preventable
Maternal deaths are relatively rare, but they should be nearly nonexistent.
Here’s how we know that: By most estimates, at least 60 percent of these deaths are preventable.
This year Tennessee issued a report that found an overwhelming 85 percent of its pregnancy-associated deaths could have been prevented.
These deaths are a cautionary tale, red-flagging places where the health system is failing.
“Think of maternal mortality as the tip of the iceberg,” said Michael Kramer, an associate professor in epidemiology at Emory University’s Rollins School of Public Health. “Just below the surface are many times more cases” of women who suffered traumatic or life-threatening complications just because they became pregnant, he said.
“Understanding and preventing maternal mortality helps us address the much larger burdens under the surface.”
Other parts of the world, notably the United Kingdom and Scandinavian countries, have spent decades addressing maternal health, with success. American women are 1.5 times more likely to die from pregnancy complications than women in Great Britain.
And while thousands of American mothers develop eclampsia each year – the condition that nearly took Christy Johnson’s life – there were only two deaths from preeclampsia and eclampsia over a three-year period in the United Kingdom, a nation of 66 million.
‘Fighting for my life’
Nea Sapp, shown here with son Ian at their home in Athens, nearly died when she developed HELLP syndrome while pregnant with Ian. HELLP is a blood pressure-related condition of pregnancy that kills up to 30 percent of the women who develop it.
In 2012, Nea Sapp of Athens became violently sick when she was about 30 weeks pregnant, throwing up constantly and in severe pain. Doctors at her local hospital thought the problem might be related to her gallbladder.
They transferred her to a larger hospital nearby, where doctors also suspected her gallbladder, she said. A few days later, they sent her to a third hospital, the University of Alabama Medical Center in Birmingham.
There she finally learned what was wrong: She had HELLP Syndrome, a pregnancy-induced blood-pressure condition that kills up to 30 percent of the women who develop it. The only cure was delivering the baby.
“I had never heard of HELLP,” said Sapp, now 37. “I was fighting for my life over something I’d never heard about.”
The most common factors that contribute to women dying in pregnancy and childbirth were simple things: lack of knowledge about warning signs for serious complications, or knowing when to seek care. This is according to a report issued by nine states that investigate maternal deaths.
Those factors were followed by provider missteps, such as misdiagnosis or ineffective treatments, and a lack of coordination between healthcare providers.
Sapp’s liver and kidneys began shutting down by the time she was able to deliver her son, 10 weeks premature. He spent more than two months in the neonatal intensive care unit. She struggled with guilt because her HELLP syndrome was the reason he was there.
She wishes she’d had a more complete picture of her potential pregnancy risks before she and her husband decided to have children.
“We’re not wanting to scare people,” she said, “but in reality, we’re showing all the roses and not the thorns.”
Trying to change
Past efforts to address women’s health at the state level could best be described as a patchwork of public and private programs with varying degrees of success. In a state like Alabama, it can be difficult to keep funding going.
Late last year, Congress passed the Preventing Maternal Deaths Act with bipartisan support, authorizing an unprecedented $12 million to help states support review committees that would better track and investigate deaths of mothers.
All of Alabama’s neighboring states have these Maternal Mortality Review Committees already. In most cases, that was thanks to legislation aimed at reducing maternal deaths.
Alabama legislators have made no such efforts.
Late last year, a coalition of Alabama doctors, nurses, public health leaders and others began forming a Maternal Mortality Review Committee under the umbrella of the Alabama Department of Public Health. The committee met to review its first cases in February.
“After working here a number of years and trying to get this Maternal Mortality Review Committee back on track,” said Thomas, “it was very heartening to see the outpouring of support.”
At the same time, another volunteer group has formed the Alabama Perinatal Quality Collaborative to work alongside the review committee.
But right now, both organizations are staffed by volunteers, running on shoestring budgets. Thomas said she hopes the review committee might be eligible for federal funding from the Preventing Maternal Deaths Act.
In recent months, Gov. Kay Ivey dedicated state funding to address Alabama’s high infant mortality rate. And there is a pilot program through the public health department called Well Woman Alabama that’s operating in a handful of counties to improve women’s health.
But so far, no lawmakers have called publicly for funding for the review committee.
TRUSSVILLE, AL – MAY 21, 2019: Christy Johnson, 35, sits with her youngest child, Lindy, during a preschool graduation party at First Baptist Trussville. Following Lindy's birth by cesarean section, Johnson nearly died from postpartum eclampsia less than a week later.
‘I’m alive, so I should be OK’
Christy Johnson had several more seizures before she woke up in the ICU, disoriented and with no memory of how she’d gotten there. Her husband told her later that as he watched her seizing while paramedics load her into an ambulance, he’d been convinced he was watching her die.
Johnson wound up back in the ER a few more times in the weeks that followed as her doctors tried to get her blood pressure under control. All the while, she said she was trying to be the best mom she could be for her new baby and her two older children. Her husband was trying to be strong for all of them.
The emotional fallout sometimes felt more overwhelming than her physical recovery.
“It’s kind of sobering, because you survived a traumatic experience, but you also feel guilty,” she said. “You think, I’m alive, so I should be OK. But the feelings of helplessness, that part is scary, the feeling of being out of control of your body.”
She wishes the weeks and months after a woman gives birth were treated like a fourth trimester. It’s a desire echoed by experts; Thomas from the Alabama Department of Public Health points out that 60 percent of maternal deaths occur after delivery, not before.
“You get a ton of attention and care going through pregnancy,” said Johnson, “and then you deliver and it’s just over.”
She’s thought about this often: She’s never been closer to death than when she was bringing life into the world. It isn’t how becoming a mother is supposed to be.
“I hope nobody has to go through what I had to go through,” she said, “and I’m one of the lucky ones.”
This project is supported by the Solutions Journalism Network, a nonprofit dedicated to reporting about responses to social problems.
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