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Well Being

COVID-19 has made the overlooked Black maternal health crisis even more vital to address

COVID-19 has made the overlooked Black maternal health crisis even more vital to address
Photo by Andre Adjahoe on Unsplash

"New normal." That's the phrase ushered in by the novel coronavirus and the devastating scourge of death from COVID-19. "New normal" is the only way we as a collective can explain our current way of life: Social distancing, face mask wearing, working and teaching from home, constantly conferencing over Zoom and scheduling telehealth appointments instead of physically seeing a doctor unless absolutely necessary.

However, not all characteristics of "normal" life are easily converted to digital expression. Specifically, giving birth.

Right now as the United States grapples with more than 100,000 COVID-19 deaths, a resurgence of the virus in a dozen states, and massive demonstrations over the most recent murders of unarmed Black men and women, there is one crisis that is not getting the same attention, a crisis that has been allowed to linger and fester in this country for decades: The glaring disparity in the maternal death rate and infant mortality rate for Black mothers and their newborns.


Pre-pandemic numbers show that Black women are three to four times more likely to die during childbirth than are white women, and Black infants are twice as likely to die at birth or immediately after than are white infants.

"The thought of losing a child that didn't even get a chance to live life is truly terrifying," says Rebecca Merriweather, who recently gave birth to a baby girl.

Merriweather wasn't aware of the statistics surrounding Black maternal health and infant mortality when she learned she was pregnant, but already had concerns of her own: "Preeclampsia and possible complications during labor and how to avoid them." Preeclampsia is a pregnancy complication characterized by high blood pressure and is 60% more common in Black women compared to white women.

"Oftentimes women take very good care of themselves," said Certified Nurse Midwife Marsha E. Jackson CNM, MSN, FACNM. "They're often knowledgeable, they're eating right, they're doing all the right things, and they start running into problems with their blood pressure creeping up and things like that and it stems back to our whole healthcare system and all of the hurts we as Black people have experienced for centuries."

To help stave off some of those complications, Dr. Chandra Adams, M.D. has had to find new ways to keep up with her patients health while also providing them the best care.

"We're doing telehealth visits, which works pretty well, but we had to work out getting blood pressure cuffs, encouraging people to buy them, that way if they aren't coming to the office we can keep up with their vital signs," Dr. Adams said.

In the midst of the pandemic some Black women have been taking their birth experience into their own hands, looking for alternatives to decrease their risks and exposure to the coronavirus and any complications that could impose on their pregnancy, labor, and delivery. Those alternatives include midwifery care.

"More Black women go to the hospital to have their babies, but I think with this pandemic we have had an increase in women seeking our services," Jackson said. Jackson is the owner, co-founder, and director of BirthCare & Women's Health, Ltd. based in Alexandria, Virginia, a midwifery practice that caters to clients who have births in their homes or in the BirthCare birth center.

Dr. Adams, The Owner of Full Circle Jax in Jacksonville, Florida runs a private practice with doctors and midwives on staff. While she believes in the midwifery and birth center model, she cautions that it is not for everyone.

"I'm not opposed to out of hospital birth, but I don't think any decisions about birth should be made out of fear . . . You shouldn't run from a hospital because of a perceived danger without understanding what the risks are of delivering outside of the hospital."

Tecoya Harris, currently pregnant with her first child, admits to having mixed feelings about giving birth.

"I feel anxious about delivery due to the fact that I can't anticipate how it will feel," Harris said. "At the same time, my faith is high so I have to trust that God has brought me to this moment because I am ready. Having resources, a strong partner, and a doula also helps bring down some of those anxieties."

Dr. Adams strongly advocates for her moms to have a doula, and also encourages pregnant women to use their voice to advocate for themselves.

"I've been hearing women saying [about health problems] 'I've never brought it up again because I was afraid of what a doctor would say to me,' and so they just stopped talking about their problem. Don't stop talking about your problem! Go find somebody who's going to listen to you, and treat you like someone who respects you, and will find out what's wrong. That's our job. That's literally our job!"

While that may be the job, history shows the healthcare industry has a negative track record when it comes to listening and believing Black women when they say something is wrong.

"The system has done a terrible job of listening to Black women," Dr. Adams said.

Tennis superstar Serena Williams and Olympic-gold medal winner Allyson Felix have both been vocal about their birth experiences, the complications they faced, and how they had to fight to be heard to get well. Yet their stories, though cautionary, still end with a positive outcome. The same cannot be said for Charles Johnson IV who lost his wife Kira in 2015 when she bled to death after the birth of their second child.

"They [were] under the care of a physician, and basically they just let her die," Jackson said, recounting hearing Charles Johnson IV tell his family's story during the 2020 virtual conference of the American College of Nurse Midwives.

Jackson and Dr. Adams believe some of the blame for the Black maternal health crisis lies with ever expanding physician practices.

"One of the biggest problems was when hospitals started to employ physicians," Dr. Adams said. "Physicians, before, when we started we'd hang our shingle and open solo practices. You had the personal care because in the similar fashion of the mom-and-pop shop you were responsible for the level of customer service, and that is how you kept your 'customers' coming back."

Now, many physicians are employed by hospitals or large doctor groups who are more focused on productivity. Dr. Adams said that has led to a decrease in time doctors have with their patients, which can lead to a decrease in care. Because of this, Dr. Adams and Marsha Jackson both say Black women need to educate themselves in every way.

"You have to do research in the beginning. You want to find out what kind of options are available," Jackson said.

"But you're not going to go to medical school," Dr. Adams added. "There's a certain amount that you can't just get from Googling or reading on your own . . . but if you gather enough information about people you'll find what you're looking for."

This advice applied before the pandemic hit. Now, the country's response to COVID-19 has made it all the more important for pregnant Black women to do their research, assess their risks, and have the hard conversations with their doctors.

On her birth experience, Merriweather said, "The labor and delivery ward where I had my child was very meticulous in keeping the section of the hospital cut off from the rest to protect the lives of the mother and baby from the virus. Each doctor and nurse was only allowed to work in that division of the hospital and had to be tested before being allowed in while wearing masks."

For Harris, hearing of positive birth experiences from friends and loved ones has helped to keep her spirits up, even in the face of the pandemic and Black maternal health crises.

"Although it is scary, seeing that other women have had healthy babies and deliveries give me hope," Harris said. "Our bodies were made to do this and we are already amazing moms with every decision we make during pregnancy."

Pandemic or no pandemic, Dr. Adams—who has been focused on the Black maternal health crisis for over a decade—says while this discussion isn't new, people are finally being heard and there is responsibility for doctors and Black women.

"What is unfortunate in the healthcare system is that Black women are not listened to, we are not treated with respect, and we are not believed when we present valid complaints," she said. "[But] what is actually physically killing us is hypertension and hemorrhage. We are not dying from people not being nice to us. We are disenfranchised and we're not receiving the appropriate amount of preventative care, and sometimes responsive care, because of that."

In early March, U.S. Representatives Lauren Underwood, Alma S. Adams, and Senator Kamala Harris introduced the Black Maternal Health Momnibus Act of 2020. The legislation is a package of nine individual bills aimed at "comprehensively addressing every dimension of the Black maternal health crisis." However, the package has received little exposure due to COVID. Once again, Black women, mothers, and their children are left to fend for themselves at a time when Black people are twice as likely to die from COVID than their white peers.

With the future passability of the Black Maternal Health Momnibus Act unknown, and the expected resurgence of COVID-19 in the fall (or until there is a vaccine) the onus remains on Black women to educate and advocate for themselves and their unborn children, and perhaps to seek a collaborative model of care where available.

"Cooperative care between midwives and physicians is essential," Dr. Adams said. "You have to have a midlevel to understand what is normal. [Someone] who has been trained enough to see enough to know what is abnormal and to appropriately refer to someone to handle when something is abnormal."

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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