‘I Was Not Listened to, I Was Not Seen.’ Why We Can’t Ignore Heart Risks in Black Maternal Mortality.

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Jolissa E., a hairstylist in Chicago’s south suburbs, was the healthiest she had ever been for much of the time she carried her fraternal twins. She got pregnant when she was at a weight that was healthy for her, and she ran, practiced prenatal yoga, and walked three times a week.

Because her twin pregnancy was considered high-risk, Jolissa was monitored closely, with visits to her doctor twice a week during her last six weeks as well as a weekly trip to meet with the labor-and-delivery team. At 35 weeks, she noticed changes in her body. It began with her blood pressure. “My normal blood pressure range is 90 over 60,” Jolissa, 32, tells SELF. “It started to creep up; 100 over 70, 120 over 80, 130 over 90,” she says. “For a person whose blood pressure is usually 90 over 60…that was too high.”

Jolissa also began to rapidly gain weight. In the last month of her pregnancy, she gained two or three pounds a day. Jolissa says that week after week she tried to sound the alarm about her weight gain and rising blood pressure with her doctor but was dismissed.

At 38 weeks, Jolissa went to the doctor on a Monday for her standard first appointment of the week. She brought her sister along with her. Jolissa’s blood pressure was high, and she was still gaining weight rapidly. When she returned Thursday for her second appointment, Jolissa noticed she had gained 11 pounds since Monday. She says the nurse noted her weight but didn’t raise any alarm until seeing her blood pressure.

“She does my blood pressure, and then she does it again, and then she switches arms and does it [again],” Jolissa says. At that point, the nurse left the room to bring in the doctor, who also took Jolissa’s blood pressure multiple times. Jolissa says the doctor turned to her and her sister and said, “I don’t want you to panic, but I need you to promise me that you’re going to go straight to the hospital. If not, I’m going to have to call 911 because this blood pressure is pretty high.” When Jolissa looked at her chart, she saw that her blood pressure was 210 over 140. She had developed preeclampsia and had to be rushed to the hospital to have an emergency C-section.

The heart health issues disproportionately affecting Black pregnant people

Preeclampsia is one of the most common conditions Black people develop during pregnancy. In 2014, the rate of preeclampsia or eclampsia (a more dangerous progression of preeclampsia) was 60% higher in Black women than in white women, according to a 2017 report by the Healthcare Cost and Utilization Project. Black women were also more likely than women of other races to experience a more severe preeclampsia diagnosis. In addition to perilously high blood pressure, the sudden and marked swelling (edema) and weight gain Jolissa experienced are classic preeclampsia symptoms, according to the Mayo Clinic.

“We know that the best treatment for preeclampsia is delivery,” Rachel Bond, M.D., board-certified cardiologist and system director for the Women’s Heart Health Program at Dignity Health in Arizona, tells SELF.

Even after delivering her twins, who are now preschool age, Jolissa had to take high blood pressure medication for years.

Preeclampsia and eclampsia are only two of the conditions that can impact heart health in pregnancy and that Black pregnant people develop at disproportionate rates. Other cardiovascular conditions Black people are more prone to develop during pregnancy include peripartum cardiomyopathy (heart failure due to weakening of the heart muscle) and venous thromboembolism (blood clots in the veins). “It’s important to acknowledge the fact that even women who do not have any prior history of medical conditions are still at risk [for adverse pregnancy outcomes] just by the mere fact that they’re African American,” Dr. Bond says.

Of course, the risk doesn’t lie in race itself. There are myriad factors contributing to these tragic health disparities, but a significant one is the stress that comes from being both Black and, in most cases during pregnancy, a woman. “The misogyny and the racism coupled together, without a doubt, makes them more susceptible to a lot of these chronic medical conditions,” says Dr. Bond.

Elizabeth Ofili, M.D., M.P.H., professor of medicine at Morehouse School of Medicine and a cardiologist with Morehouse HealthCare, agreed, noting that racism in the medical community can play a role in the kind of care Black pregnant people receive and can contribute to how their comorbid conditions are evaluated in connection to their pregnancy.

There are also less common heart conditions that can pose an increased threat to Black pregnant people, such as mitral valve stenosis, which can lead to serious complications if left untreated. Mitral valve stenosis happens when the valve separating the upper and lower chamber of the heart is narrowed and doesn’t allow blood to easily flow to the lower chamber, causing pressure to back up in the upper chamber. Dr. Ofili says a young healthy person with mitral valve stenosis could carry on without knowing there was a problem, but the seriousness of the condition intensifies during pregnancy because of increased blood volume. And while Black people are not more susceptible to this rare heart condition, if their symptoms and concerns around heart health are not taken seriously, mitral valve stenosis can become another aggravating factor in the high rates of Black maternal mortality. “[If left untreated] in pregnancy, mitral stenosis becomes a trap, a really bad death trap,” Dr. Ofili says.

Even more concerning, it’s not only during the actual pregnancy that Black pregnant people have to worry about their heart health.

Postpartum heart health risks in Black people

“About one-third of the time, heart issues occur in the postpartum period,” says Dr. Bond. Black postpartum parents are at increased risk of pregnancy and labor-related heart issues up to one year after delivery.

Reagan D., a 911 dispatcher in Chicago, says she knew something was wrong four days after she came home from the hospital with her youngest son, Hendrixx, who is now 2. She felt excruciating pain in her chest and was sweating profusely. “I don’t like to call the ambulance. I don’t like to use resources like that if I can help it,” Reagan, 32, tells SELF. “My husband knew something was wrong because I said, ‘Call the ambulance.’”

When the ambulance arrived, Reagan says that instead of the EMTs rushing to help her, they argued with her, eventually convincing her she was having a panic attack and not what felt to Reagan like a heart attack. Inside the ambulance, an EMT took her blood pressure and pulse, but Reagan says they did not give her an EKG to measure heart function even though the machine was on the truck. Instead, Reagan says an EMT told her: “I’m 100 percent positive that you’re having a panic attack. You need to relax. We don’t take people to the hospital for panic attacks. Follow up with your primary care doctor.”

Reagan begrudgingly took the EMT’s advice. She met with her primary care doctor at the end of the week and told her what happened. Her doctor ordered labs for the next week and sent Reagan home, she says. Over the weekend she had two more episodes, so she followed her intuition and drove herself to the hospital. Upon arrival, she was rushed to have an EKG and then an angiogram to further examine her heart. She had had three heart attacks.

Reagan was diagnosed with spontaneous coronary artery dissection, a condition where a lining in an artery of the heart tears, preventing or slowing blood flow to the heart. While SCAD is uncommon, when it does happen it can be deadly. “The cause of it has a lot to do with changes in our hormones,” Dr. Bond says.

Other heart conditions that can develop in the postpartum period include the acceleration of a normal heart attack, abnormal heart rhythms, a tear in the aorta, or peripartum cardiomyopathy, which can happen in the last month of pregnancy but all the way up to five months postpartum as well, according to the American Heart Association (AHA). Data cited in the journal Circulation suggests peripartum cardiomyopathy accounts for one in four of all cardiovascular-related deaths from pregnancy.

Any of these adverse outcomes, if survived during the pregnancy and postpartum periods, can put Black parents at an increased risk of heart disease, stroke, or heart attack down the line.

“The only way to help reduce that is to make sure that you’re in the hands of a primary doctor and/or cardiologist who’s focusing on helping you manage your traditional risk factors,” says Dr. Bond, who lists blood pressure, cholesterol, diet, activity, alcohol intake, and smoking as some of the considerations to keep an eye on.

What Black pregnant people can do to take care of their hearts

Given that Black people are at greater risk of adverse pregnancy outcomes, being informed and prepared to advocate for yourself is vital in getting necessary care from the beginning.

“Pregnancy is in and of itself a stress test,” says Dr. Bond. She suggests Black people go through preconception counseling to better understand what factors are important to consider if and when someone decides they want to get pregnant.

Dr. Ofili suggests Black people also request to have an EKG done as part of their annual checkups. This test may be covered by insurance, depending on the provider, or require an out-of-pocket expense. EKGs can show doctors if there is anything unusual or abnormal happening with your heart and let them know if you need to see a cardiologist for further examination. Having that information before pregnancy and delivery can be lifesaving.

But the onus is not only on Black people to save their own lives during and after pregnancy. “The entire team that’s caring for the woman needs to be attuned to the fact that Black women do have this higher risk,” says Dr. Ofili, speaking specifically of heart complications during and after pregnancy. To get there, Dr. Ofili notes that this will likely require structural changes to the U.S. medical system, beginning with how doctors are trained.

“We have to approach this from every angle,” says Dr. Ofili. “It’s the medical students, but it’s also the residencies…and then you’ve got the midwives and the certified midwives. Let’s [have] a team approach where people can actually learn from each other and respect the fact that pregnancy is one instance when everybody doesn’t just do their job and go away, but they’re communicating.”

Jolissa believes that even though she was in constant communication with her doctor about her rising blood pressure and weight gain, her concerns were dismissed because she was a 27-year-old single mother with Medicaid insurance.

“Sometimes even being armed with all the information that I was armed with, and doing all the research that I did, and having the advocacy of family that are in the medical profession, I still felt like I was not heard, I was not listened to, I was not seen—or when people did see me, they made an assumption about me and then acted accordingly,” she says.

In those instances, Dr. Bond suggests people find a new doctor, if at all possible: “That may be a daunting task, but there are doctors out there, doctors that identify with your background and/or are empathetic to your background that will help.”

And despite (or, perhaps, because of) the compounded stressors of racism, misogyny, and inequity facing Black pregnant people, Dr. Bond and Dr. Ofili both encourage patients to try to reduce their stress as much as possible. That’s much easier said than done, but it can make a significant enough difference that it’s worth emphasizing. “Once the stress is managed then the appropriate management of the possible chronic conditions that that stress brought on [can be addressed],” says Dr. Bond. When possible, seeing a therapist or counselor for help reducing stress can be a great option. When that’s not possible, there may be other resources available, including digital therapy and books by Black therapists, that can still offer helpful stress reduction advice.

Another way to manage that stress is to ask for help. “We know that there are all these things that we deal with as Black women. We have the stress, the job sometimes—or multiple jobs—and you’re trying to balance all of it,” says Dr. Ofili. “I think it’s looking at: how can we get these women more communal support?”

Jolissa and Reagan both had communal support from their families. They say that even when you’re doing everything right health-wise and raising your concerns with your doctor, the most important thing for Black pregnant and postpartum people to remember is to try to advocate for themselves. Until sweeping systemic change happens to the point where Black maternal mortality is no longer a crisis, self-advocacy is going to be an essential part of the survival equation.

“They say we’re aggressive,” Reagan says. “Okay. You have to be aggressive about you. They’re not going to be aggressive about you. You have to be aggressive when it comes to yourself.”

Related:

  • Coronavirus Might Make Black Maternal Mortality Even Worse
  • 8 Midwives and Doulas Explain Their Roles in Ending Black Maternal Mortality
  • You’re Black and Pregnant. What Should Your Birth Plan Actually Look Like?

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