Belle Von Stockhausen is a new mother in Tuscon, Arizona. Her baby is 5 months old. And if she hadn't overruled the medical staff who kept sending her home after her C-section, she might not be alive to see him.
After giving birth, Von Stockhausen developed peripartum cardiomyopathy, a rare weakness in the heart that often does not present strong symptoms until the issue is too severe to stop. In Von Stockhausen's case, her hands and feet swelled up, but the staff thought it was from her IV from the C-section and sent her home, with more Oxycodone for the pain.
"I literally felt like I was being crazy. I kept saying I'm not okay, and everyone kept telling me what was happening was normal," Von Stockhausen said.
Two days after Von Stockhausen was sent home, she returned to the emergency room with shortness of breath and more swelling. The staff told her it was all part of recovering from birth and sent her home with Valium, she said. The very next day, she returned again. This time, her lips were blue.
"I really couldn't breathe this time, and they put me on oxygen when I walked in the door," she said. "They had me admitted into cardiac in less than an hour. All the while I'm one week postpartum and couldn't have the baby in the hospital with me: F-minus experience overall."
Like Serena Williams, who nearly died of a pulmonary embolism and subsequent hematoma after giving birth to her daughter Alexis, Von Stockhausen continued to insist she needed help, despite her condition being downplayed. In Williams's case, her medical history showed blood clots might be an issue, and she knew exactly what tests and treatment she needed, even as doctors ignored her. Von Stockhausen only had her instinct and the insistence of her husband, Adam.
"I didn't want to go in [the third time] at all, but Adam made me," she said. "I was so embarrassed to be like, 'Hi, me again, I'm pretty sure I'm dying. Can you check again?' "
But that check saved her life.
Barbara Levy, vice president of Health Policy at the American College of Obstetricians and Gynecologists, says oftentimes women allow professionals to speak over their instincts. "We all want it to be okay, so we don't push ourselves to get care. We make a call, and someone will attempt to reassure us, and we will accept that because no one wants to be sick, so we stop pushing when our gut is telling us it's really not okay," Levy said. "We allow the more intellectual piece to take over, but we know our bodies better than anyone, and we cannot discount that."
Other new mothers are not as empowered as Williams and Von Stockhausen and can fall through the cracks. More than 150,000 women experience severe illness during and after childbirth each year in the United States. And maternal morbidity here is no small issue, either. It's spiked in the past decade, to where the U.S. rate is 26.4 deaths per 100,000 - several times that of other rich nations and a number that is on the rise.
Monifa Bandele, vice president and chief partnership and equity officer at MomsRising, a decade-old organization that pushes for policy change on issues that affect women, says one of the driving factors in that morbidity rate is racism. And the studies back her up.
"One of the greatest athletes of all time could have lost her life because this is how black women are treated when they try to talk about pain," Bandele said.
Bandele says black women face a perfect storm of factors resulting in disbelief of their symptoms: inequitable access to health care services; a disproportionate rate of other mitigating factors, such as other illnesses and increased stress levels; and socio-economic pressures and disadvantages that aren't taken into consideration in the maternity ward.
"It's not just the experiences you have giving birth. It's all the health experiences of your life, and right now there isn't a social, psychological, economic level along with the physical level," she said. "There's so much that would make a high-risk pregnancy, other than just the vitals at the moment: Are you financially stable, are you a victim of domestic violence, do you have a consistent home, are you sleeping well, eating normally? . . . There are other risk factors, and we are missing that holistic approach."
So, what can be done? Policy-wise, Bandele and Levy agree that Medicaid must be protected, and that written procedures must be put in place to weed out innate bias and stereotyping, so that when someone comes in during or after childbirth there are certain steps that must be taken, and conditions that must be ruled out, before the mother can be sent home.
"We need systems in place to bypass the current bias," Levy said. "A laminated card that EMTs have in the ambulances that run through the things they need to do for a woman who delivered who is short of breath. Don't just assume it's asthma; here are the things you have to do regardless. This has to be in place for women after delivery for three to six months. If women come in during that time period, these are the things we have to rule out before we send them out the door. Those must be checked off."
For now, women must advocate for themselves and bring backup to hospitals and doctor's offices.
"You have to protect yourself. Get prenatal care if you can, a doctor, a midwife. Make sure you have an advocate with you when you go into the hospital so when you're giving birth, someone else can keep control of the system," Bandele recommended.
And what can women in general do to be heard?
"It's easy to think of us as hysterical or too anxious. In some ways, we may have to use some buzz phrases, like I feel like there is an elephant sitting on my chest for chest pain or shortness of breath," Levy said.
She also advised women write down their symptoms and patterns.
"When you write it seems more serious to both yourself and also your providers," she said. "Keep a diary of your symptoms, then you can say, 'Here, this is not just my perception. Here is my weight. Here's the objective data I've taken down myself.' "
Special to The Washington Post
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