Forgotten Mothers: This story is part of an ongoing series by The Frontier to examine and investigate maternal health in Oklahoma.
With her due date approaching, Sarah Johnson thought she was doing pretty well for a first-time mother.
Her birth plan was ready and thought out. She would deliver at a Tulsa hospital a little more than an hour from her home in Tahlequah so she would have access to specialized care. She decided on a natural birth with no epidural or other medical pain relief.
As a public health consultant with the state health department, she was accustomed to advocating for quality health care and felt prepared to do the same for herself. Her husband and family would be at the hospital to support her, too — her mother-in-law, a nursing director at a Tahlequah hospital, and her stepdad, a physician’s assistant.
The pregnancy had gone perfectly, and on the afternoon before Valentine’s Day in 2016, Johnson, 35, and her family gathered at the hospital, ready to welcome a baby girl.
But during delivery Johnson started to bleed, and after her daughter Mila was born, the pain grew so intense she couldn’t even hold her baby.
Johnson’s body was sending her loud signals: Something was wrong. But when she tried to alert doctors and nurses, they brushed her off. This is why you should have had an epidural. Childbirth hurts, one nurse told her.
Even as a first-time mom, Johnson knew the pain shouldn’t have been more intense than it had been during labor. She could only lay on her side, as being on her back was more agonizing. To prevent herself from moving, she gripped the side of her hospital bed so tightly her knuckles turned white.
“Something is wrong,” she told nurses. “Something is going on down there. I need someone to check it out.”
As the hours passed and the agony dragged on, and still no one examined her, she grew more and more anxious. Despite her pleas, nurses had moved her out of the labor and delivery section of the floor and into the postpartum area, a place of recovery less-equipped for emergency medical interventions.
Johnson felt as if she were laying on her deathbed.
“I thought this was going to be the end of my life,” she said. “I’m going to go out begging and nobody is listening to me.”
Soon, the new mother’s condition would get much worse.
Though the vast majority of pregnancies and deliveries go without a hitch for the baby and mother, experts and health advocates are sounding the alarm on the number of women dying or suffering unintended consequences from pregnancy or birth-related complications in Oklahoma and across the country.
In Oklahoma, the number of mothers dying during pregnancy or the 42 days after pregnancy is on the rise — the most recent measurement, taken from 2015 to 2017, shows the death rate for mothers increased by nearly 50 percent compared to the previous three-year period. Experts and researchers agree: There is no single cause.
On average, one woman dies each month in Oklahoma from complications related to pregnancy or childbirth.
And for every woman who dies, about 70 experience potentially fatal complications, accounting for nearly 2 percent of all births in the state in 2017, data obtained from the health department shows. The complications include severe bleeding, infections and heart failure.
Oklahoma hospitals reported 830 women suffered from life-threatening complications in 2017, according to the data. Hospitals recorded 800 cases in 2016.
Belinda Rogers is the director of maternal-child health and government affairs at Oklahoma March of Dimes. Nationwide, the maternal mortality rate is worse now than it was 20 years ago, she said
“In Oklahoma one woman dies every month due to pregnancy complications and nationally, two people per day die,” Rogers said.
The problem has mostly gone uncharted in the state, but experts and researchers say there is a myriad of problems.
Oklahoma has a state committee that looks into maternal deaths quarterly, but it has never issued a report on the 112 deaths reviewed since 2009. The lessons learned from those women’s deaths, at least so far, are mostly unknown.
Only in the last year have committee members started to track whether each death might have been preventable — before then deaths were only discussed among members in board meetings during executive session, when the public was not allowed in the room.
The Frontier requested data on the deaths from the state department of health’s Maternal Mortality Review Committee and received a presentation that broke down deaths by race, age group, pregnancy status, the woman’s insurance status and whether the death was related to pregnancy.
About 58 percent of the women who died were under 30, and more than half died in a hospital. The presentation also included top-cited health conditions, which included chronic hypertension, obesity and cardiac problems. At least 70 percent of the deaths were related or possibly related to pregnancy complications.
“Nationwide, but in Oklahoma too, we really don’t have good data around maternal mortality,” said Rogers, who is also on the review team. “Oklahoma is fortunate that we do have a committee, but we do need to make that more robust.”
There are 10 to 15 maternal deaths in Oklahoma each year, said Jill Nobles-Botkin, director of Perinatal & Reproductive Health for the Oklahoma State Department of Health. She also oversees the state’s Maternal Mortality Review Committee.
“Our mortality rate is very high, but the actual number of deaths is not high,” Nobles-Botkin said. She said the board is in the process of creating its first report.
Nobles-Botkin said the board has made recommendations to physicians on issues such as the importance of pregnant women getting flu vaccinations.
The committee just in the last year started to document whether deaths could have been prevented, Nobles-Botkin said. The team added the question to its review form when it standardized its process to conform with the Centers for Disease Control and Prevention.
“Although the information has always been discussed, it was not documented until we started using the current form,” Nobles-Botkin said in an email.
The board does not review cases of women who almost died from complications of pregnancy but survived. When it comes to those cases, the data is limited.
“We haven’t gotten there yet. We hope to be able to start reviewing … cases, but we need to catch up so that we’re reviewing deaths in real time,” Nobles-Botkin said. “But it’s on the radar.”
Oklahoma has a goal to lower its maternal death rate to 11.4 maternal deaths per 100,000 births by 2020. Between 2015 and 2017, the state’s mortality rate was 23.8 deaths per 100,000 births. USA Today ranked 46 states in 2018 on how they’re addressing maternal health and placed Oklahoma at No. 17, with No. 1 — Louisiana — being the worst.
The problem is much worse for women of color compared to white women. Black women are nearly three times more likely to die during or shortly after pregnancy than white women in Oklahoma
Studies have found more than 60 percent of maternal deaths are preventable.
Experts and health care providers say there is no single cause behind the rising rate of mothers dying and nearly dying in the state — there are a myriad of problems.
Mothers are older than they used to be, have more chronic health conditions and many pregnancies in the state are unplanned. Meanwhile, access to health care — and quality care — hinders pregnancy outcomes. Women sometimes don’t recognize the post-birth warning signs that flag the need for medical attention, and in other instances, doctors don’t listen to new mothers’ concerns.
Deaths caused by trauma — such as car accidents — have been rising in recent years, too.
Oklahoma ranks near the bottom in the U.S. for women and children’s health and is also among the worst states for its number of uninsured. In 2017, only Texas had a higher uninsured rate than Oklahoma’s 14.2 percent that year.
The number of birthing hospitals in the state has tumbled, going from 62 in 2004 to the current 48. Of Oklahoma’s 77 counties only 28 contain a birthing hospital, forcing many women to travel longer distances to deliver their babies.
At the same time, March of Dimes recently released a study that found 41 Oklahoma counties are considered maternity care deserts with no access to obstetric providers or hospitals offering obstetric care — health care that specializes in pregnancy and childbirth.
Thousands of Oklahoma’s new mothers on Medicaid immediately lose health care coverage after giving birth, and almost none are able to remain insured following the postpartum period, in part because Oklahoma is one of 14 states that chose not to expand its Medicaid program.
Almost 70 percent of women with maternal deaths between 2009 and 2017 were covered by Medicaid, which provides government health insurance to low-income people, according to data from the state’s Maternal Mortality Review Committee. However, for women who are pregnant, the state’s income eligibility guidelines to receive Medicaid are far more relaxed.
Oklahoma’s Medicaid program, SoonerCare, has two programs that specifically serve low-income mothers: Soon-To-Be-Sooners and SoonerCare Choice.
Women lose benefits from the Soon-To-Be-Sooners program as soon as their pregnancy is over. Mothers on SoonerCare Choice lose coverage six weeks after pregnancy.
Laura Bellis is the executive director of the Take Control Initiative, a Tulsa-based organization that studies maternal health and provides free contraception. Often, she said, the focus shifts solely to the baby’s health instead of the mother’s.
“With Soon-To-Be-Sooners, your insurance is stopping at this point and the baby will be insured now,” Bellis said,“but that gets into treating that mother as a vessel instead of as an individual who deserves and should receive care.”
Rogers said expanding Medicaid would help give women better access to care both before and after pregnancy.
“That would be so helpful for more women to access really important prenatal care and postnatal care,” she said.
Quality of care also needs to be examined as implicit bias and stigma are common themes, Rogers said. It’s important for health care providers to listen to patients and for women to learn how to advocate for themselves if they feel like something is wrong.
“I think education is a key component,” she said. “We’re trying to improve that patient-provider relationship.”
Almost five hours after giving birth, Sarah Johnson laid in her hospital bed with a look of panic on her face, pain continuing to wrack her body. She started begging for someone to call a doctor to examine her.
A concerned nurse came to her side: “Are you a drama queen?”
Johnson’s husband interjected. “Absolutely not.”
“OK, this is an issue then,” the nurse said.
Johnson had a large hematoma — a pocket of blood caused by internal bleeding — in her pelvic area. It is not entirely uncommon following a vaginal delivery and is typically easy to diagnose and treat.
In Johnson’s case, the condition wasn’t discovered until five hours after labor. It ruptured as a doctor examined her. She soon fell into unconsciousness from blood loss, and was rushed into emergency surgery to repair the tear and stop the bleeding.
Two days after the procedure, unknown to doctors, the new mother hemorrhaged again. Her doctor sent in a colleague who checked her stitches and cleared Johnson. He told her the bleeding she was experiencing was from “old blood” that was left over from the surgery. Lab tests showed she had low hemoglobin, an indication of possible blood loss. Doctors gave her a blood transfusion and sent her home the next day.
“They didn’t do an exam to determine where the bleeding might be coming from,” Johnson said. “No real testing, no MRI, no anything to see if I might be bleeding someplace internally.”
Johnson spent one night in her Tahlequah home only to begin hemorrhaging again the next morning. The situation had become an emergency, and doctors at a hospital there gave her blood through a rapid transfusion, typically a response to massive blood loss. Johnson was then transported by helicopter to a Tulsa hospital — a different facility from the one she delivered in.
At the hospital, Johnson had more blood transfusions. Doctors administered multiple other blood products and performed an exploratory surgery to find what was causing the bleeding. They also performed a dilation and curettage, known as a D&C, to remove pieces of placenta that had been left in her uterus after the birth — the cause of the hemorrhaging.
“My story was hard and unusual, apparently, for the medical staff because I had two different complications, and they confused them a lot,” Johnson said.
‘This wasn’t just an isolated case’
There are evidence-based policies and protocols hospitals can put in place to better prevent deaths and life-threatening cases.
Oklahoma started paying more attention to incidents such as Johnson’s a few years ago when it joined a federally-funded initiative that aims to improve pregnancy outcomes through an approach using data. The program, the Alliance for Innovation on Maternal Health (AIM) is a nationwide collaboration that issues guidelines on best practices for hospitals.
The Oklahoma Perinatal Quality Improvement Collaborative (OPQIC), made Oklahoma the first state to join the initiative in late 2015. OPQIC started working with hospitals that year to encourage them to implement measures to prevent negative outcomes of pregnancy.
Those measures include having “hemorrhage carts” in delivery rooms in order to quickly respond to severe bleeding and protocols in place to treat hypertensive emergencies.
The guidelines also recommend doctors and nurses measure blood loss by placing a bag or bedpan under the woman to measure blood loss during and after delivery, as well as weighing blood-soaked sponges.
Johnson said that never happened in her case. She still has no idea how much blood she lost.
OPQIC Director Barbara O’Brien said evidence shows that for Oklahoma hospitals participating in the AIM initiative, cases of severe complications can be reduced. O’Brien did not provide The Frontier requested data on hospitals it has worked with or their performance measures.
“We’re saving lives I think,” O’Brien said. “We’re definitely are seeing improvements in our severe maternal morbidity.”
Johnson has teamed up with OPQIC to use her story as a cautionary tale for hospitals, in an effort to encourage them to use AIM’s hemorrhage protocols. She has worked especially closely with the hospital she delivered in, which she praises for changes it has made.
But Johnson says she still thinks Oklahoma has a way to go with how it addresses and reports serious complications related to pregnancy and birth.
“This wasn’t just an isolated case. Things like this are happening to women all over the country, and especially in Oklahoma,” she said.
“It terrified me and disgusted me. I had all of those things that were an advantage to me and there’s other women who don’t have those things and what happens?”
Johnson also joined the state’s Maternal Mortality Review Committee. She is the only survivor on the 33-member board, which mainly consists of doctors, nurses and public health officials. She said she worries some committee members are too quick to blame bad outcomes on mothers.
“There is a lot of, ‘What did the women do wrong,’” she said.
Dr. Rodney Edwards is on the board and specializes in maternal-fetal medicine at the University of Oklahoma Health Sciences Center in Oklahoma City. He said the committee is mostly focused on determining whether each death was preventable and looking at big-picture issues such as access to health care.
Edwards said he believes there are several reasons more women are dying.
“Some of it is, I think, we have more sick pregnant women than 30, 40 years ago,” Edwards said. At the same time, he believes the state is getting better at detecting pregnancy-related deaths, which increases the recorded number.
He said pinpointing the exact reason women are dying will be difficult.
“With the current amount of resources committed to (the Maternal Mortality Review), actually closing that gap is going to be difficult,” he said.
Committee members said they are expecting more resources for the board soon, as new laws are passed and maternal health stays in the national spotlight. New legislation passed in May will require the committee to issue a report to the Legislature annually and make recommendations on how to prevent future deaths. Noble-Botkins said that will help put the issue on a state-wide platform and make more people aware.
The new law will also allow the committee more access to information related to deaths, such as law enforcement records.
Nobles-Botkin said committee members have noticed many women coming into pregnancy unhealthy.
“Either they have a chronic-care condition or haven’t had a checkup, are smoking, drinking or obese,” she said. “It’s not all about the care you get in the hospital.”
Johnson said though her family is doing well, she struggles with post-traumatic stress disorder from her delivery experience.
“It just messes with my psyche a lot that people wouldn’t listen to me in a place you should be heard,” she said.
“I was highly informed, highly educated, did everything I could do in my case and bad things still happened to me.”