July 25, 2023 – On June 2, 2019, 35-year-old Anne Hutchinson gave birth to her first child, Lillian. There were no problems with the pregnancy or the birth at Fairview Hospital, which is part of the Cleveland Clinic system.
But 2 days after the birth, she had shortness of breath and couldn’t lie down and breathe.
“My mom’s a nurse, and she was like, ‘You need to go to the hospital immediately,’” Hutchinson said. When she was admitted to the hospital, there were suddenly “10 doctors in the room.”
Hutchinson was diagnosed with peripartum cardiomyopathy, a weakness of the heart muscle. She had heart failure. The seriousness of heart failure is measured by the ejection fraction, or the percentage of blood the heart pumps out. Normal is 50%-70%. Hutchinson’s ejection fraction was 20%.
She was put on medication, left the hospital after 5 days, and her ejection fraction eventually rose to 35%. But she was still at risk for sudden cardiac death.
“The cardiologist said to me, ‘You probably can’t have any more children.’ My heart did not bounce back,” Hutchinson said.
By the end of 2019, her cardiologist determined that she needed an internal cardiac defibrillator, which monitors the heartbeat and delivers electric shocks to restore the heart’s normal rhythm when needed.
By 2020, when Hutchinson’s ejection fraction was near normal, she decided that she wanted another child.
“I had a daughter. She was beautiful and amazing. But I felt like I wanted to have a sibling for her,” she says. Yet when her cardiologist at Fairview Hospital heard the plan, she told her getting pregnant again “would be like Russian roulette.”
Hutchinson is one of a growing number of women whose medical condition puts them at high risk of death during and after giving birth. An estimated 30% of maternal deaths in the United States result from cardiovascular disease – a problem that has become more common with increases in diabetes and obesity.
And in some women with previously normal high blood pressure, hypertension can develop suddenly during pregnancy. This is called preeclampsia and is increasing in the U.S., particularly in Black women. In rare cases, it can become the life-threatening condition eclampsia, with seizures and death.
Three-time Olympic medalist and world champion sprinter Tori Bowie was found dead in June of apparent complications of pregnancy. The medical examiner’s office in Orange County, FL, said she was believed to have been in her eighth month of pregnancy and may have died of eclampsia.
Heart conditions in pregnant women are one of a long list of reasons why the United States has the highest maternal mortality rate of any developed country. But the risk is marked by significant racial differences, with death rates three times higher in Black women, compared to White women.
Rates of maternal mortality have increased in recent years. In 2021, 1,205 women died of maternal causes, compared to 861 in 2020.
What troubles many experts is that it is estimated that 80% of these deaths are preventable.
“That is a ridiculous number,” said Melissa Simon, MD, MPH, director of the Center for Health Equity Transformation at Northwestern Medicine in Evanston, IL. “For a health care system in a country that is so high-resourced and high-income, for eight out of 10 deaths for moms who are pregnant [to be preventable], that’s absolutely unacceptable.”
Pregnant women are not only at risk of death from cardiovascular complications, but other types of problems, including hemorrhage, or excessive bleeding; thrombotic embolism, a type of blood clot; and infection.
But experts now are focusing attention on non-medical reasons for maternal mortality, such as racial disparities and the fundamental issue of whether women are telling doctors about their symptoms but are not being heard.
The government has acknowledged the depth of this problem with the CDC’s “Hear Her” campaign, which includes videos of women who describe how their health professionals did not take their concerns seriously.
In one such video, a woman named Sanari says 2 days after the birth of her second child, she started developing soreness.
“By day 3, it just didn’t feel right. I asked the nurses, explained my symptoms and that I was having crazy pains, and they assured me it was just gas,” she says on the video.
Sanari described how she started to have odorous discharge and ended up in an emergency room at a different hospital. Health care providers found a large abscess on her uterus.
“I’m glad I didn’t stop at no, and I’m glad someone finally heard me – someone finally listened to me,” she said.
“Hear Her” featured another woman named Lindsay, who had preeclampsia in her first pregnancy and began to get symptoms during her second pregnancy.
She describes how she voiced her concerns to her doctors, saying, “sometimes it would be, ‘Oh, you’re pregnant and your feet are supposed to swell. … It’s just fine.’ But I didn’t feel fine.”
The campaign aims to raise awareness of warning signs that require fast medical attention to prevent pregnancy-related deaths.
But Shanna Cox, associate director of the CDC’s Division of Reproductive Health, said the agency has collected many stories of women who died or nearly died because their concerns were not being addressed properly.
Cox says another part of the campaign “is really focused on health care providers and listening … to their patients, providing that respectful patient-centered care to be sure that all their concerns are addressed.”
And some experts believe the thinking has shifted even more dramatically.
“We’ve moved from beyond the days of blaming the individual, the birth person or the woman, to say you haven’t done this, you haven’t come into health care, you are not taking care of yourself, you aren’t keeping your appointments”, says Laurie Zephyrin, MD, MPH, vice president of the Commonwealth Fund, a private foundation in New York City dedicated to improving health care.
Zephyrin says the health care system falls short of providing equitable, quality care. “There’s data that shows Black people receive worse care than White people for about 40% of quality measures,” she said.
These disparities have led to the formation of organizations like National Birth Equity Collaborative, an advocacy group in New Orleans working to improve maternal care for Black patients.
Carmen Green, vice president of research and strategy, said institutional racism has been embedded into some health care providers.
“They have this hierarchy that teaches them, they have to manage, they have to control, they have to direct the medical experience, and that is just not how birthing works,” she said.
She used the example of the birth experience as a car ride, where the mothers have been in the backseat with the doctor driving. “We want the birthing person in the driving seat and want to be respected as a person who is deciding where that destination is going,” Green said.
She says health providers often “blame the mamas” based on assumptions, stereotypes, and biases against low-income people.
So how is American medicine responding to the medical and social causes of maternal mortality?
WebMD surveyed 10 medical centers ranked by U.S. News & World Report as the country’s top facilities for obstetrics. They were asked what programs they had and studies they had done to try to reduce maternal mortality, improve racial disparities, and target cardiovascular causes of maternal mortality.
One of the most extensive programs was founded at the Stanford School of Medicine in Stanford, CA, in 2006. The California Maternal Quality Care Collaborative includes 200 hospitals in the state committed to ending preventable maternal mortality and racial disparities.
Nine hospitals in the collaborative have started programs to reduce hemorrhages, manage high blood pressure disorders, and reduce the rate of cesarean deliveries. All are important reasons for maternal mortality.
These programs helped bring about a 62% reduction in California’s maternal mortality rate from 2006 to 2016. And 2023 figures show that California has the lowest maternal mortality rate of any state.
Alabama has the sixth highest rate of maternal mortality in the nation. The University of Alabama at Birmingham wants to address the racial disparities in maternal mortality with a cooperative called the P3 EQUATE Network.
The network is part of a $20 million program by the American Heart Association to gain greater understanding of the disproportionate effect of maternal mortality on Black and Native American people.
The program works with pregnant and postpartum women “to discover ways to reduce racism and social problems that contribute to poor health outcomes.”
In addition to collaborative efforts, the WebMD survey found maternal mortality programs at all the top medical centers.
NewYork-Presbyterian Hospital has a Mothers Center that provides specialized care to pregnant women with complications.
The University of Chicago Medical Center established a program called “Systematic Treatment and Management of Postpartum Hypertension” that includes patient and staff education, standardized hospital discharge instructions, and a follow-up in a postpartum hypertension clinic.
A 2021 study found that the program had helped increase the number of postpartum women who correctly follow blood pressure control guidance.
A program called MOMS Navigation at Northwell Health in Long Island, NY, provides support to high-risk mothers. The program decreased 30-day readmission rates for all patients by 50% and for Black birthing patients by 60%. Reducing readmission is an important measure for reducing complications.
Vanderbilt University Medical Center in Nashville has what it calls the first-of-its-kind educational podcasts Healthy Mom Healthy Baby, where 30% of the content is devoted to health disparities.
And several centers, including Brigham and Women’s Hospital in Boston and NewYork-Presbyterian, make sure mothers have access to doulas – professional support people trained in the needs of the family during pregnancy and childbirth.
The WebMD survey found that nine of the 10 centers have obstetric programs devoted to cardiac care, including the University of Chicago, Stanford Medicine, UCLA, and the Cleveland Clinic.
But the survey results raise the question: How can we have these programs and research at our best obstetrics centers devoted to reducing maternal mortality and have the highest rate of all developed countries?
“Maternal mortality largely falls on pregnant and birthing persons who do not intersect with nor are touched by the best obstetrical care centers in the country,” Simon said.
Unfortunately, she said, the pregnant people who face “high maternal mortality rates … face all the access-to-care barriers and do not have the privilege of birthing or accessing care at top centers.”
Anne Hutchinson believed going to a top center – the Cleveland Clinic – would give her a good chance of safely delivering a second child.
Karlee Hoffman, DO, a cardiologist in the hospital’s cardio-obstetric high-risk clinic, said Hutchinson “came to me, she was determined to have another child, and she said, ‘Please help me do this. I’m doing it regardless. So, I would really like your support in moving forward,’” Hoffman recalls.
Hutchinson said Cleveland Clinic doctors told her she had a 20% to 30% chance of peripartum cardiomyopathy again if she had a second child. If that happened, the risks “ranged from mild decompensation of my heart function to death,“ she said.
Hutchinson and her husband decided to go ahead with the pregnancy. Her parents cried when they found out. But Hutchinson says she was confident in the cardio obstetric team at Cleveland Clinic.
Her fertility medicine raised the possibility of multiple births, which would be a definite threat to her life. Her heart failure medicine, Entresto, could not be used during pregnancy, so her doctors put her on older medicines.
She got pregnant in June 2022 and developed gestational diabetes, which can affect pregnancy due to raised blood sugar. Another potential risk. She was carefully monitored by the specialists and hospitalized once.
At 37 weeks, she was induced and had a forceps delivery. On Feb. 15, 2023, her second daughter, Charlotte, was born.
Hutchinson was asked to write about how she felt when she delivered Charlotte:
“I am not sure how to put into words the love, joy, and elation that I felt holding Charlotte for the first time. As I write this, I have tears of joy in my eyes thinking of that moment. I had prayed for her for so long and after being told I couldn’t or shouldn’t have any more children.”
“I felt that Charlotte and I were forever bonded in triumph from that moment on. We did it and made it out alive! And our family was now complete. I have so much joy watching the love that is growing between Charlotte and Lillian. Life is truly amazing, and I am forever grateful to have them.”