KANSAS CITY, Mo — Although it's been eight years, Sapphire Garcia-Lies still remembers the excitement surrounding the birth of her second daughter, Ella.
“Everything had gone perfectly fine with my pregnancy, and then I got to 38 1/2 weeks, and I noticed she wasn’t moving as much,” Garcia-Lies said.
Garcia-Lies said she visited her doctor and shared her concern, only to be told that was normal.
Despite a nagging suspicion, she returned home, only to seek out a second opinion at the hospital two days later.
"They did a sonogram and they couldn’t find a heartbeat," Garcia-Lies said. "She had passed away in utero, and it turns out that she had her cord wrapped up several times around her neck and her blood supply had cut off."
Heartbroken and devastated, she delivered Ella, knowing there would be no first breath, no first cry.
Holding her stillborn daughter, Garcia-Lies said she wondered if her race caused her doctor to disregard her concerns.
“If they had caught that in time when she was still moving some, then I think that she probably could’ve been saved," Garcia-Lies said.
DISPARITIES IN WOMEN'S WELLNESS CARE
Research shows that Black babies are two to three times more likely to die at birth, highlighting an inequity in infant mortality.
The same is evident among adult Black women, who are two to three times more likely to die in childbirth compared to white women.
It's a trend that was thrust into the spotlight several years ago when two celebrities experienced life-threatening complications back-to-back.
RELATED: Racial and Ethnic Disparities Continue in Pregnancy-Related Deaths
In 2017, superstar Beyoncé gave birth to twins, and fans later learned she had to have an emergency cesarean section due to preeclampsia, which can be fatal.
A few months later, tennis star Serena Williams was rushed into emergency surgery after giving birth because she suffered a pulmonary embolism.
Today, both mothers are fine. But the same can't be said for roughly 700 women per year.
Of Kansas women who die due to pregnancy related causes each year, 70 per 100,000 are Black. White women, however, account for 22 per 100,000.
In Missouri, 92 per 100,000 deaths involve Black women compared to 22 per 100,000 deaths for white women.
While a number of factors play into these statistics, some experts and advocates said bias in health care is contributing factor.
And it's not just African Americans. Latina and indigenous women are disproportionately affected too.
RACISM AND PUBLIC HEALTH
Women of color are more likely to experience bias in health care, according to various medical research reports. Last June, the American Medical Association "pledged action to confront systemic racism" and five months later announced a new policy recognizing racism as a public health threat.
Some experts said this dates back to the 1800s when James Sims, often referred to as the father of OBGYN, performed experimental surgeries on enslaved women without anesthesia.
“Historically, what that has done is that has created a bias that Black women can take more pain, that they are stronger,” Dr. Sharla Smith, assistant professor with the University of Kansas School of Medicine, said.
Smith presents this topic to local medical providers, sharing the stories to show doctors, nurses and medical students how women feel their concerns weren't taken seriously because of their skin color.
“There’s this misperception that if you’re Black, if you’re from a particular community, you’re not educated," Smith said. "You don’t have health insurance. You don’t have a job. And so you don’t have the knowledge to actually know how to take care of yourselves."
Kansas City mother Izula Maximillen is among those convinced bias prevented hospital staff from taking her seriously when she went to the emergency room.
At the time, she suspected her intense pain was the result of another ectopic pregnancy.
“When I spoke to the admissions officer, I told him that I was pregnant [and] that I’ve had ectopic pregnancies in the past, and I’m having one right now and he told me to go wait and sit down,” Maximillen said.
RELATED: New AMA policies recognize race as a social, not biological, construct
Ectopic pregnancies happen when a fertilized egg implants in the fallopian tube, which causes life-threatening bleeding, according to the Mayo Clinic.
At the time, Maximillen said, she received no major diagnostics that day aside from a drug test. She waited for almost five hours -- floating in and out consciousness -- until blood work came back showing she had sepsis.
Only then did the hospital perform an ultra sound.
“And now they wanted to do an ultrasound and figure out what was going on," Maximillen said, "and when they did the ultrasound they were able to confirm that there was a burst in my fallopian tube."
She'd lost half her blood supply due to internal bleeding and was rushed into surgery, but not before she first said goodbye to her young son.
"I do remember him saying that he loved me and me telling him that I loved him, and being concerned it was going to be the last time that I saw him," Maximillen said.
After the surgery, she remembers opening her eyes with a sense of purpose, vowing to share her story so no other woman of color experiences the trauma she endured.
ADDRESSING RACIAL BIAS IN WOMEN'S HEALTH CARE
Maximillen and Garcia-Lies' stories are just some of the accounts being shared with doctors in Missouri and Kansas. And they've caught the attention of the American College of Obstetricians and Gynecologists (ACOG).
"What I would say to these folks who are sharing their stories is that I believe you, and that ACOG believes that this is a problem within our own practice and the larger system of health care and wellness,” Dr. Colleen McNicholas, a St. Louis OBGYN and ACOG Fellow, said.
McNicholas said ACOG already has a long history of work on this issue, including clinical and advocacy work.
"This is everything from our clinical guidance to OBGYNs to legislation we have endorsed, including the Black Maternal Health Momnibus and HR 4995 and 4996," McNicholas said.
While ACOG has made formal steps to address racial health inequities due to racism and bias in their field, McNicholas said more needs to be done on a larger level.
"Simple things [like] expanding Medicaid, having access to preventative care, looking at what access in rural communities looks like, for example," McNicholas said.
RELATED: Why the AMA is committed to a diverse physician workforce
That's where Uzazi Village comes in. The Kansas City, Missouri, nonprofit helps fill the gaps for Black and Brown women at no cost.
“What we’re trying to do is reverse those health outcome trends and help our community families have healthier pregnancies and healthier babies," Hakima Payne, Uzazi Village founder, said.
Uzazi Village works directly with women and families, offering education, resources, and support ranging from breastfeeding classes to providing expecting mothers with doulas.
“Doula is a professional labor support person or a professional labor coach," Payne said. "Except that our doulas are also trained to work with women during their pregnancy and in their postpartum periods."
These women can serve as an advocate for women of color to make sure their voices are heard by medical providers. For Garcia-Lies, it's a service she knows well.
She became a doula after losing her baby Ella in an effort to better advocate for women of color and their babies.
"I’ve seen clear-cut cases where the work I do as a doula has paid off with a better outcome for the mom or the baby," Garcia-Lies said.
It's a fight to help others that keeps her motivated, and helps keeps Ella's memory alive.
--
More information on maternal and infant mortality and inequity can be found below:
