As attention on the Black maternal health crisis and Black maternal mortality rate increases, advocates would like to add those who survive their complications but cope with chronic health issues to the conversation.
“The maternal health crisis can have a lifelong impact,” Tina Marsden, a Black postpartum heart failure survivor, told theGrio during February, which is National Heart Health Month. “In addition to addressing the maternal mortality rate, we really need to start putting some emphasis and focus on maternal morbidity, that’s women that are living with these conditions after we receive the diagnosis.”
After surviving postpartum heart failure and living with complications to this day, Marsden, a mother of two living in Atlanta, is endeavoring to make sure what happened to her doesn’t happen to anyone else. She’s also striving to demonstrate that there’s life after heart failure.
“We can live life beyond that diagnosis,” she said.
Marsden runs the Tina Marie Marsden Foundation and advocates for maternal and heart health and living with a disability. She also launched the online platform Why Advocate, where others can be connected with resources. Through her work, she has cultivated a community of survivors and a system of support for others. She is doing this work at a time when Black women have the highest maternal mortality rate of any other demographic, with heart disease as the leading cause.
Marsden noted that even with all of the increased attention the Black maternal health crisis has been receiving, “We can’t prevent 100%.”
She added, “There are still going to be women that receive some type of diagnosis. We want to be there to be a means of support.”
Part of Marsden’s “why” is the memory of receiving her diagnosis in 2002, after giving birth to her second child in her late 20s.
She said initial warning signs, such as shortness of breath, were dismissed as symptoms to be expected during pregnancy. She was later given an emergency C-section but not given a reason why. Roughly four months later, she was still experiencing shortness of breath along with lethargy and an overall sense that wasn’t something wasn’t right. She received a handful of misdiagnoses, including walking pneumonia. Finally, she received a devastating diagnosis: she had experienced congestive heart failure and developed postpartum cardiomyopathy (PPCM). With this news came a way of life that was foreign to her.
“I didn’t have anybody to reach out to. There was nobody that looked like me that I knew of that was going through what I was going through,” she recalled.
Despite this, Marsden pushed on. Ultimately, due to the missed warning signs during her pregnancy and further complications after, she had to have an Abbott HeartMate II implanted, a mechanical heart pump/LVAD that she lives with to this day, now as an ambassador for the device. She also later learned that, even though she had led a healthy and active lifestyle, she had a history of heart disease and heart complications on her father’s side.
“That was never considered throughout my entire pregnancy,” the health advocate also said.
Marsden’s work now also includes empowering others to be their own health advocates, especially when healthcare professionals may dismiss their concerns and symptoms.
She said, “Too often, we feel like that when we’re advocating for health — just advocacy in general — that when you ask a question [about your health] that you’re questioning somebody[‘s expertise].”
Marsden stressed that pushing for more precise answers or even getting a second opinion isn’t questioning your doctor’s authority.
“We should be more comfortable with building that network, building that team because we are a team. So don’t hesitate to ask questions,” she said.
As someone who lives with a medical device and, at times, still has symptoms to manage, Marsden also advocates for the disabled, whether that means speaking out against housing discrimination or lobbying her local government to consider certain health care bills.
Marsden has also become an inspiration to others. Through her work, she has connected with many others in similar situations, including a young woman diagnosed with the same condition at the age of 18. Marsden recounted how that woman, now in her mid-20s, said that Marsden has shown her that living a full life, while not always easy, can be done despite living with a medical device.
Peer support is an important tenet of Marsden’s work. Her foundation has a support group she’s dubbed the “Sisters Meetup,” where other survivors have the opportunity to meet regularly in Atlanta’s metro area to do fun activities.
She said the social meetups are effective “to show women that diagnosis is not your final destination. Because we did not fight to live, not to live. I fought to live because I want to live.”
Kay Wicker is a lifestyle writer for theGrio covering health, wellness, travel, beauty, fashion, and the myriad ways Black people live and enjoy their lives. She has previously created content for magazines, newspapers, and digital brands.
Never miss a beat: Get our daily stories straight to your inbox with theGrio’s newsletter.