When Joan Smith discovered she was pregnant in May 1994, it was an answer to her most ardent prayers. She was 34 and already a mother to a 7-year-old daughter. She knew she wanted more children and started trying to get pregnant when her daughter turned two. After months and then years of no conception (doctors told her it was secondary infertility — an inability to become pregnant or to carry a baby to term after previously giving birth to a baby) Smith, whose real name is not used to protect her identity, decided that a pregnancy would not happen and that she should be content with her one child. Then, out of nowhere, she started to feel an occasional lightheadedness and was too lethargic to complete her routine chores. “I knew something was wrong for sure, but I did not dare hope I was pregnant,” she said.

But she was. A test by her doctor confirmed she was almost three months along. Both she and her husband were determined that everything should be perfect. She quit her job and devoted all her time to her family and staying healthy. She was seven months pregnant when her family relocated to Fresno. She was healthy, and her pregnancy was uneventful. They had found out it would be a boy. Everything pointed to a routine labor and birth.

She went into labor at 40 weeks, and by the time she got to the emergency room of what used to be the University Medical Center, the contractions were coming fast and furious. She was admitted and hooked to a number of monitors. Someone examined her and listened for the baby’s heartbeat. Then the nurse left, and the second nurse came in to listen, and then a third. No one said anything to her.

Although writhing in pain from the contractions, she sensed that something was wrong. No one would make eye contact with her. “Is my baby OK?’ she asked. “Your doctor will talk to you when he gets here.” “What is wrong with my baby?” she wailed. “The doctor will be here soon.” She was wheeled into labor and delivery where the doctor told her that the baby she was carrying no longer had a heartbeat. It was all a bad dream, she told herself.

It wasn’t. Her much wanted baby boy was stillborn two hours later. Smith tears up as she tells the story of the child she lost 26 years ago. “I did not want to wake up,” she said. “As long as I was not fully awake, I could still feel my baby moving in my tummy. I did not know how to go on.” Smith’s loss is not an oddity. Her experience is repeated every day in cities throughout the United States as thousands of Black babies are lost each year — a phenomenon that most experts agree is largely preventable.

Black infant mortality is pretty common

Infant mortality is just one of the plethora of pregnancy-related problems that Black families encounter. Black women are at an elevated risk for pregnancy-related complications, and Black babies represent the largest share of children who die before their first birthday. The statistics are abysmal. Black infants in the United States are more than twice as likely to die as white infants before their first birthday— 11.3 per 1,000 Black babies, compared with 4.9 per 1,000 white babies, according to the Centers for Disease Control (CDC). This racial gap adds up to more than 4,000 dead Black babies each year.

According to the Fresno County Department of Public Health, in 2017, the infant mortality rate in Fresno was 20.3 per 1,000 black babies and 5.1 per 1,000 white babies. Although Blacks accounted for only 5.1% of Fresno County’s total births in 2017, they represented 15.6% of total infant deaths. This is a wider disparity than in the state or the nation. “This issue is so entrenched in long histories of racism, not just unique to Fresno,” said Bridgette Blebu, post-doctoral fellow in Obstetrics and Gynecology with UCSF, who is involved in the California Preterm Birth Initiative. “I would say obviously, it’s not just a California thing or even a Central Valley thing.” This blight of Black infant mortality is inseparably linked with another tragedy: a crisis of death and near death in Black mothers themselves. Black women are three to four times more likely to die from pregnancy related complications than white women.

Black mothers’ unacceptable rate

According to the CDC, approximately 700 to 900 new and expectant mothers die in the U.S. each year; an additional 500,000 women experience pregnancy-related complications. More than half of these deaths and near deaths are preventable. A disproportionate number of these women are Black. Though California’s maternal mortality declined by 55 percent between 2006 to 2013, according to the state’s department of public health, Black women are still three to four times more likely to experience pregnancy-related complications than mothers from all other racial groups. The crisis of maternal death persists across class lines for Black women, and even college educated Black women were over five times as likely to experience pregnancy related death than their white counterparts — a fact that highlights how deep-rooted the inequities really are. This racial disparity is actually wider than in 1850, before slavery was abolished, when Black women neither owned themselves nor had any agency.

“A lot of people attribute that to experiences of racism and the accumulation of stressors related to systemic racism that transcend your economic position,” said Blebu, who is interested in understanding support resources and services for Black women during pregnancy. “So it’s the experience of being Black in America that’s actually driving those trends at that point.” Experts now agree that racism, the root cause of the persistent disparities in maternal and infant health, must be tackled in a multi-prong approach to bridge the gap and prevent loss of lives. 

Environmental factors loom large

“The built environment plays a critical role in health outcomes, when neighborhoods are constructed to be less than nurturing and are consistently underinvested in,” said Dr. Venise Curry, a consultant for nonprofits and the 2019 winner of the Hero Awards from the College of Health and Human Services at Fresno State. “The health and well being of all its residents are compromised. Infant mortality has always been considered a measure of a community’s well being.”

Curry has advocated and promoted health and health equity in the most disadvantaged communities in the central San Joaquin Valley region, particularly west Fresno. As a psychiatrist, Curry has focused on preventive psychiatry, choosing to address the intersections of medicine and social and environmental justice work. She served on the Maternal and Child Health Expert panel and helped create the African-American Infant Mortality report, which provides recommendations on how to decrease low birth weight rate, preterm birth and infant mortality among Blacks in Fresno County. “When you add institutional and structural racism, whether you acknowledge feeling stressed or not, your body can still respond by releasing cortisol and stress hormones that, over time, can wear your body down, and make you more vulnerable to chronic diseases like hypertension and heart disease,” Curry added.

This is especially problematic during pregnancy, Curry said. It’s “the root cause of maternal mortality in our community. So when there are fewer parks, trees and green space, and more industrial plants, families are over-exposed to “toxic pollution burden” and it is reflected in higher rates of asthma, diabetes, and preterm birth. Black women experience this preconception, exposure to pollution, toxic environments, and systemic racism in health care, all of which can help explain poor birth outcomes, regardless of education or economics. “It (the gap between the rates of infant mortality and maternal mortality for African American women versus other groups) has always been there, and it hasn’t changed all that much . . . primarily because there hasn’t been a real will to change it,” Curry said. “Oftentimes, the focus has been on what the individual mom is doing or not doing as opposed to looking at her environment.”

So Curry advocates for equitable policies to address the problems within the environment and the neighborhoods — land use policies and how they are impacting the health and well-being of moms, from preconception, during pregnancy and postpartum. “So, if you’re in a neighborhood that was traditionally redlined, and you are in that ZIP code with more toxic facilities, more truck traffic, fewer amenities present, your quality of life has already been compromised,” Curry said. 

The challenge of west Fresno

The west Fresno community is one of the most impacted in this area. According to Fresno County Department of Public Health Vital Statistics for 2009-2013, infant mortality rates and preterm birth rates are 11.4% and 13.3% respectively in west Fresno’s ZIP code 93706, compared with rates of 7.1% and 9.6% for Fresno County. Furthermore, infant mortality rates increased 87% among African American families compared with white families from 2007-2014, according to a 2015 study by Central Valley Health Policy Institute.

According to the study, women in the west Fresno area are more likely to lose their babies if they spaced their births shorter than 33 months; give birth before their due dates; are low-income earners and use Medi-Cal as their primary insurance.

The California Environmental Protection Agency declared in 2013 that residents of west Fresno live with higher health risks than anyone in California. Life expectancy in west Fresno is more than 20 years lower than in northeast Fresno, according to a 2012 study done by a team of researchers including the Central Valley Health Policy Institute at Fresno State, as reported in a 2013 Fresno Bee story.

Janice Mathurin-Boyd, director of operations for West Fresno Health Care Coalition, Inc., said that the dire situation in southwest Fresno is a result of decades of disinvestment in the community. “The impact of these structural drivers of inequity and disadvantageous social determinants of health are no better exemplified than by Southwest Fresno’s poor birth outcomes,” Mathurin-Boyd said. 

Premature birth is a big problem

Women all over the world have their babies prematurely. However, in Fresno County, as elsewhere, there are significant racial disparities. The preterm birth rate for Blacks was 13.2 compared to 8.5 for whites.

A typical experience is that of Claudia Taylor, whose daughter was born 10 weeks early. Taylor said she had started to feel pressure and was concerned. “I called the doctor, and he was like, ‘that sounds normal. There’s nothing to get checked’,” she said. “And so I just went on.” But the pain wouldn’t go away. “I’ve had two kids before, so I know what contractions feel like. And so I did the things that they tell you to do, like lie down on your side,” she said. “They just were not going away. And so finally, I just grabbed the kids and we went to Kaiser.” The baby spent the first two weeks of her life at Valley Children’s Hospital and another week at Kaiser before she could go home.

Inadequacy of healthcare systems

In “Listening to Black Mothers in California” published in September 2018, the National Partnership for Women and Families reported a significant difference in the way Black and white women perceived their treatment by healthcare providers. Overall, Black women reported discrimination from their maternity care providers more frequently than white women — more than 10% said they were treated unfairly during their hospital stay because of their race or ethnicity compared to 1% of white women. Curry said healthcare providers play a big role in health outcomes. “You have to think about who is providing the sort of maternal care, and whether they are invested in the health and well being of that patient.” A doctor’s office, she said, can also set the tone for everything else that happens.

“The stress can start as you’re trying to get to the doctor. Do you have transportation? If you are trying to get there on public transportation because of economic situations, then you are already stressed,” Curry said. “So if you get there, and you’re a little bit late, you may be told you can’t be seen. And the person who tells you that may or may not be pleasant; they may or may not treat you with dignity and respect. So even if you’re not aware of it, you still have the triggering of stressful hormones.” Cecilia Ochoa said she started experiencing very sharp pains in her stomach area when she was in her third trimester of pregnancy. She had Medi-Cal and had her prenatal care at a clinic where she saw whichever provider was on duty. “The doctors thought that it was gas pains and told me I needed to watch what I ate,” Ochoa said. “They were giving me all that kind of medication, and I was going through a lot of pain, but they never gave me further tests or exams to determine whether it could be something else.”

This went on until she was 36 weeks. “I went to the hospital because I just couldn’t stand the pain, and they told me to just to go home and relax.” She said the pain was unbearable, so she kept going back. They told her they were going to induce her because the baby’s weight was too low. “Every time I told them I had pain, they would just check my baby,” Ochoa said. “They would lie to me and say, ‘we just checked the baby’s heartbeat and the baby was fine’.” Ochoa had surgery 14 days after she had the baby. Her surgeon told her it was her gallbladder.

“They were not listening to me or hearing me,” Ochoa said. Another young mother, Zammiah Smith, said she felt the nurses did not listen to her when she was in labor with her first child. She said her experience the second time around was much better.

The adequacy and quality of care received by Black women is questioned in a recent report on CNN. According to the report, “Black newborn babies in the United States are more likely to survive childbirth if they are cared for by Black doctors, but three times more likely than White Babies to die when looked after by a white doctor.” The CNN report noted that “the mortality rate of Black newborns in hospital shrunk by between 39% and 58% when Black physicians took charge of the birth,” amplifying how shocking racial disparities in human health can affect whether a child lives or dies and the first hours of a child’s life. The disproportionate toll on Blacks is the main reason the U.S. maternal mortality rate is so much higher than that of other developed countries. Pregnant and new Black mothers in the U.S. die at about the same rate as women in third world countries, according to the World Health Organization.

Overall healthcare disparities

Disparity in the quality of healthcare received by Blacks in comparison transcends women’s and infant care. According to a 2019 report by the Century Foundation, despite increased access because of the Affordable Care Act, disparities still exist across health conditions — including maternal mortality, infant mortality, heart disease, diabetes, cancer, and other health issues — when comparing Blacks and whites. The report concludes that Blacks “experience racism and inequality in their daily lives, and throughout their lifespan” which have grave impact, and the gap between Blacks and whites are stark. Medpage Today reports that a Black woman is 22% more likely to die from heart disease than a white woman and 71% more likely to die from cervical cancer. Dr. Curry agrees that there is a “real issue of whether Black women, regardless of their socioeconomic status, are receiving a level of care that is considered standard.” She insists that medical practitioners should be held to a standard. “You can’t change hearts and minds, but you can change behavior by establishing that there are consequences for poor outcomes.”

Dr. Curry believes that addressing the health of the Southwest Fresno community and “achieving birth equity” require more than just medical care and must include “access to healthy food, affordable housing, quality education, stable job and economic opportunities, clean air and water.” Creating solutions, Curry said, “requires our community’s input, organized resources and organized plans. And we see this in the collective work around infant mortality, led by many of the people interviewed for this story.” She said, “We are creating our own narrative and leading this work, collaborating and in alignment with academic institutions like UCSF, our public health department, and First Five Fresno County.”

Best baby zone–growing real opportunities in west Fresno (GROWS) 

Mathurin-Boyd, who is the program manager of the Fresno GROWS (Growing Real Opportunities in West Fresno) Best Baby Zone, a west Fresno-based program initiative, said that the program is about more than babies. “It is transformative; it is about creating vibrant healthy communities,” and a “lifetime of opportunities and experiences that are driven by conditions where one lives.” The program initiative began in June 2019, when the West Fresno Family Resource Center (WFFRC) and coalition partners comprising community champions, community-based organizations, academic institutions, maternal/child experts and other partners, successfully competed to become one of only a handful of communities around the county to be named a Best Babies Zone (BBZ), Cohort 4, by the National Organization of Urban Maternal and Child Health Leaders (known as Urban MCH).

The number of people served by this program has increased since the pandemic, as residents seek support for basic needs – food, jobs and financial support. On average, WFFRC’s combined programs, including the Fresno GROWS initiative, reach 500 people a month, at least 20% are Black and brown birthing families or women of child bearing age and/or with children ages 0-5, Mathurin-Boyd said. “We see the Zone as a vital platform for change to improve birth outcomes for the African American community by galvanizing community partners and multi-sector stakeholders focused specifically on African American birth disparities,” Mathurin-Boyd said. The initiative also works to “sustain an infrastructure to communicate regularly with Fresno GROWS Best Baby Zone residents, devise a policy and systems change agenda that is grounded in research; build the capacity of the West Fresno workforce, and organize community members to advance the work.” To achieve the goals of the program, Mathurin said they will “foster innovation and program improvements informed by community wisdom and advocate for interventions across the life course that build upon intergenerational connections while increasing “social capital in the communities of west Fresno.”

Supported by an African American leadership team, Mathurin said “the iniative also works to reduce “exposures to the risk factors that increase poor birth outcomes through community developed solutions.” 

Black infant health program

“This is much more than just a baby program, it’s an all-around total health and well being,” said Fanta Nelson, health educator with the Black Infant Health program in the Fresno County department of health. Black Infant Health provides “support within a culturally affirming environment, honoring the unique history of African American women.” The Fresno County Health Department program aims to help Black women have healthy babies, according to information on their website. It is open to all pregnant women of African American descent at no cost.

“It is very broad based, connects with mental health issues if that’s what’s needed; connects with maybe even economic opportunities; connects with mothers, long after they’ve had the baby in terms of providing support postpartum for the mother and the children,” Nelson said. The program provides support long after the women are done with the program and helps them “have a clearer path to success in their lives,” Nelson said.

A major part of this program is modeling for the mothers how to advocate for themselves and how to access and use available resources to benefit their families. Leoncia Riley, went through the Black Infant Program in her last pregnancy. It was her fourth pregnancy, and someone talked her into joining. “I didn’t know what to expect there. I thought it would be about breastfeeding or taking care of a baby,” Riley said. “Then I was asked, ‘what are you going to do in your life?’”

Riley, who said her life had been stuck since 2007 when she was 15 and had lost both her mother and grandmother within weeks of each other, had never expected more from life. Her education had ended in the eight grade when her first baby was born, and she was barely literate. “Yes. Okay. You really don’t get that question except you go into school. ‘What you want to do in life?’ I remembered what I used to say when I was a kid, like I want to go into cosmetology.” Two years later, Riley, 29, and mother of four boys, has earned her GED certificate. She says she owes it all to the Black Infant Health program.

The program which serves about 150 women a year, connects with other organizations that provide after school care, so that the children thrive and do well in their communities. 

Doula project

Studies show that a Black woman who is assisted by a doula improves the quality of care and the outcome. The doula acts much like a surrogate mom and provides support through pregnancy and birth and the first months of the infant’s life. In November 2019, the Black Infant Care program started a partnership with Anthem Blue Cross, an insurance provider, which pays for their patients to have a doula. “We will work with an African American doula from Hanford, and she has seven other doulas under her wing that she has trained,” Nelson said.

Even with COVID-19, the doula is able to provide services and coaches the mom through labor and delivery via the cell phone, and she’s doing virtual visits. “Amazing experience, and it’s working,” Nelson said. Nelson said that using the services of a doula results in positive birthing experiences, better breastfeeding and bonding for a new mother and her child, compassionate emotional and social support as well as extended postpartum and newborn care. The doula supports the new mom for several months after delivery “because we noticed that they still need support after they’ve had this baby, a newborn,” Nelson said. “Think about new young 16-year-old moms who have no support at home.” Nelson said that women do understand one another and can relate, and that energy transfers over into the client. “And it’s just a unique process to see these women who have never had so much support or love from people that actually look like them,” she said. “They’re not used to someone caring, thinking about them, taking that time to listen to them.” 

Perinatal Equity & the Fatherhood project

The Perinatal Equity — an $8 million grant to fill gaps in existing Black Infant Health Program Services, became law in June 2018. Nelson said that its goal is to improve Black maternal and health outcomes and reduce infant mortality rates. Counties which participate in the Black Infant Health have the option of at least two more intervention programs. Fresno County chose the Fatherhood initiative.

“We felt the African American men needed support and resources, just like the moms we serve, and there aren’t very many programs supporting fathers and supporting them as Dads,” Nelson said. “We know that fathers have a big impact on a child’s life.” The Fatherhood or Partnership Initiatives improve a child’s prospects by enhancing their cognitive, social, and emotional development, Nelson said. It also “validates children and gives them a sense of worth and value.” Fathers also benefit significantly and “gain a sense of purpose which often leads them to behave more responsibly.” 

DAWN across west Fresno neighborhoods

Funded by the Fresno City Council, DAWN is an environmental justice initiative, created by Dr. Curry and Concerned Citizens of West Fresno to address decades long environmental injustice in West Fresno. “A huge portion of the [DAWN] initiative is really creating our own pipeline of a maternal child health workforce — nurses, medical technicians, doulas and physicians ”investing in our neighborhood infrastructure and ensuring equitable opportunities that improve all of our health outcomes,” Curry added. West Fresno, the city of Fresno and the Central Valley have a shortage of healthcare providers. “We know there’s a need, and a job market for more,” Curry said. “Because we know that kind of care, that kind of interest, that kind of compassion and investment is, most often, made by people who absolutely understand that our lives are what’s at stake.” Curry said that part of the DAWN initiative “is to make sure that we can continue to create these opportunities for our community.” Another part, she said, is to “connect health and environmental factors with our current health outcomes, so, starting very young, we make those connections clear and understand air quality and how it impacts your ability to breathe.” An environmental justice fellow is working to develop a curriculum to address environmental concerns in West Fresno, promote educational opportunities, and engage with the next generation of youth leaders through mentoring, Curry said. 

Reimagining antenatal care

More micro-preemies — babies weighing less than 3 pounds 5 ounces — are born at the Community Regional Medical Center than any other California hospital, so several organizations such as UCSF Fresno, First 5 Fresno County, and the Central Valley Health Policy Institute at Fresno State are joining forces in a study that could lead to a reduction of premature births. According to Ellen Middleton, a nurse practitioner midwife, doctoral researcher and faculty member with UCSF Fresno, who is one of three medical providers seeing patients in group prenatal care, the project’s aim is to “turn the curve on prematurity in Fresno County among high risk mothers.” Middleton said, “we had a steering committee, and one of the projects that we decided to do was what they call group prenatal care” which has been shown to reduce prematurity by 30%. EMBRACE — a four-year study to compare outcomes and experiences of women who receive individual prenatal care with women who receive group prenatal care — takes place at the Family Healthcare Network, a federally qualified health center. The study groups eight to 12 women with similar due dates. Members of the group meet for two hours at a time for “prenatal education, nutrition counseling and training in mindfulness and stress reduction,” according to an article published by the Community Medical Centers. “It is just group prenatal care, the research has been done on mainly middle class women,” Middleton said. “We wanted to do the research with a higher risk group of women to see if we could impact it in that group.” After visits with their midwife or obstetrician, the women would have a chance to ask questions in their group and discuss concerns and share experiences. “COVID is really impacting low income women because they don’t have the resources that other people have,” Middleton said, adding that the researchers are trying to adapt and continue working with patients remotely because of the pandemic.“You can’t do group prenatal care with COVID.” Women do not have to have a history of preterm labor in order to participate, Middleton said. “We don’t want to exclude anybody from the care, so the group care is offered to all women. “We’re going to be collecting the data on the other side to see a model — women we consider to be high risk, does it make a difference?” 

Lasting Solutions

Dr. Curry said that change has already started with families in the community civically engaged by — registering and committing to voting, and understanding the core issues around neighborhood infrastructure and advocating for academic achievement and equitable economic opportunities. “Our community — moms and dads, children and youth, students and clergy — are activated and engaged in work that collectively addresses these health issues that are intertwined, and require a multi pronged approach to solve them,” Curry said. Curry believes that the major investment of the community college satellite campus in West Fresno is “a tangible example of the community’s power of participation in bringing about actual progress.”

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Dr. Dympna Ugwu-Oju is the senior editor for Fresnoland.

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