This story originally published on North Carolina Health News.
For 35 weeks, Tomeka Isaac had a normal pregnancy.
As a 40-year-old Black woman, she was at high risk for preeclampsia, a complication characterized by high blood pressure that can cause organ damage. But she diligently went to every doctor’s appointment, and to her relief, was told her blood pressure was fine.
“My baby Jace was amazing to carry,” she said. “Every appointment I was fine, he was fine, and I didn’t have morning sickness my whole pregnancy.”
Then, on a Mother’s Day weekend visit to her in-laws’ house, she collapsed.
She was rushed to a small hospital in Pineville, North Carolina. Her son had died in utero, an employee told her bluntly.
“Just like point-blank, period, kind of like, ‘I have other things to do, but here’s this,’” Isaac said. “Me and my husband, we were devastated.”
It was only then that doctors informed her she’d developed a rare, life-threatening condition that causes bleeding, liver damage, and sometimes, loss of pregnancy.
Isaac was told she would need to deliver her stillborn baby at another nearby hospital. But upon arrival several hours later, she was hustled into emergency surgery due to her pregnancy-related complication. It would be one of seven operations, in what became a 45-day hospital stay as doctors fought to save her life.
“They told my husband, ‘We’ve thrown everything at her but the kitchen sink, and we don’t know if she’ll survive,’” Isaac recalled.
Isaac “coded” – meaning that doctors had to haul her back from the edge of death – not once, but three times.
“When I got out of the hospital, I just started reeling, like how did we even get here, what happened? Everything was going so well … and then it wasn’t.”
In North Carolina, Black women and childbearing people are more than two and a half times more likely to die of pregnancy-related complications. With Isaac in support, a sweeping new bill package in the North Carolina General Assembly, collectively known as the “North Carolina Momnibus Act,” aims to combat these disproportionately high rates of maternal mortality among Black mothers planning to give birth.
Companion bills were proposed in both the Senate and the House in early April. The identical bills aim to address not only so-called social determinants of health that increase the risk of pregnancy-related complications among expectant Black parents but also the implicit bias in health care professionals long believed to play a role in their disparate mortality rates.
“I want people to understand that implicit bias kills people,” said Isaac.
Black women and childbearing people are three to four times as likely to die of pregnancy-related complications than White people nationally, according to the Centers for Disease Control and Prevention. These trends bear out regardless of socioeconomic status or education level — a Black person with a college degree is five times as likely to die in childbirth than a White counterpart—suggesting implicit bias in the health care system may play a role.
Isaac, who said she regularly attended all her check-ups and appointments throughout her pregnancy with Jace, had been suffering from a condition known as hemolysis, elevated liver enzymes, low platelet count (HELLP) syndrome. HELLP syndrome is considered a variant of preeclampsia, a serious pregnancy complication that Black people are 60% more likely to develop than White people.
The condition can be hard to identify, particularly if protein doesn’t show up in a pregnant person’s urine.
But Isaac said her doctors never took urine samples during her regular check-ups — a practice that, a friend later told her, is standard for pregnancy-related doctor’s visits.
“This was my first pregnancy, so I didn’t know that was a thing. I looked at my medical records, and they had not done a urine sample on me since they verified my pregnancy,” she alleged. “Even though they said that I was high-risk for preeclampsia, even though that’s standard care.”
HELLP has a 30% mortality rate for expecting parents, and without intervention, has a higher rate of stillbirth death than both severe preeclampsia and eclampsia.
“It’s absolutely possible Jace would be alive [had they found this earlier],” Isaac said. “Sixty percent of maternal deaths in the United States are preventable. And it’s just things like this, it’s somebody not doing what they’re supposed to do.”
Doulas can fill the gap
The new legislation would establish an evidence-based implicit bias training program for all health care professionals involved in perinatal care.
Any health practitioner with a license, registration, accreditation or certification would be required to take the training in order to renew their license and continue practicing in the state of North Carolina.
The bills would also establish a “Maternal Mortality Prevention” grant program for community organizations already working to combat maternal mortality in Black people.
The program would award five grants of anywhere between $10,000 and $50,000 annually, with special preference given to Black women-led organizations that provide resources aligned with evidence-based practices for improving maternal health outcomes – including those that connect doulas to pregnant Black community members.
“When I first heard about the high infant and maternal mortality rate for women of color in 2015, it struck a kind of a nerve,” said Cindy McMillan, an Asheville resident. “I myself had a really bad first pregnancy where I almost died, and lost my son shortly after childbirth. I actually almost died a second time with my twins. My story is, for me, traumatic, because of the things that I went through.”
Today, she works with SistasCaring4Sistas, a women-of-color-led doula collective that provides free services to pregnant Black women in western North Carolina.
“When you think about our experiences, the common denominator with all of us is we said something, and we weren’t heard [by providers],” said McMillan. “Doing this work, we understand that there’s procedures, medically, that we may not be familiar with.
“We’ve also supported White women who they give those explanations to, and they’ll break it down to the smallest denominator to make sure they understand,” she added. “And those are not the same privileges we as Black women have been given.”
Evidence suggests birth doulas may help combat some of the risk factors associated with maternal mortality. People who are supported by a doula when giving birth are significantly less likely to need a cesarean section, which Black people experience at higher rates than all other racial groups. They can also serve as an advocate, a second set of eyes, and a birthing resource.
“We all have had adverse maternal experiences,” said Wakina Norris, another doula in the collective, which works in partnership with Mountain Area Health Education Center and Mothering Asheville. “I hear other people’s stories and mine may not have ended in death, but it was traumatic and close enough.”
“We want to be there to make sure they get the same treatment as anyone else that doctors and nurses will support, whether they have the same pregnancy conditions, whether it’s preeclampsia, whether it’s diabetes, whether it’s medical induction that needs to happen,” said McMillan. “We’re right there with them, the whole process.”
Doulas can be expensive, though, she said, and accessing a doula who can provide culturally appropriate support free of bias can be challenging.
Community-based programs like SistasCaring4Sistas, founded in 2016, help fill in the gaps.
“When we found out what doula work was, we were like, wow, there’s really a profession out where a person can actually be there to support you, emotionally, physically, provide information-based advocacy,” McMillan said. “Our community had not had any access to it. It kind of was upsetting because it could have actually saved or supported so many other women, including ourselves”
In addition to funding community organizations, the Momnibus legislation would create a task force to study and issue recommendations for funding to address “social determinants of health,” nonclinical factors that impact health such as poverty, education, health care access and systemic racism.
This “Social Determinants of Maternal Health Task Force” would be under the Department of Health and Human Services, and consist of state agency leaders, people with lived experience of loss of a family member due to maternal mortality, patients who have suffered maternal morbidity, maternal health workers, and leaders from community organizations that address maternal mortality with a focus on racial and ethnic disparities.
The Momnibus Act also includes provisions for funding for DHHS to study issues affecting new moms serving in the military, and the impact of pandemics on pregnant people.
“I’ve been talking to a number of my constituents that just don’t feel that they’re getting the support they need, particularly as first-time mothers during this pandemic and so we really wanted that provision to be in there as well,” said Sen. Natalie Murdock (D-Durham), one of the sponsors of the Senate bill and herself a Black woman of childbearing age.
“I’ve had more friends than I can count quite frankly that have had difficulty with childbirth, either there were issues that were ignored or weren’t taken seriously by their doctors, or they just didn’t feel that they have the support they needed,” Murdock said.
Hannah Critchfield is NC Health News’ Report for America. RFA is a national service program that places talented emerging journalists in local newsrooms to report on under-covered topics and communities.