TOPEKA — Driven by personal loss, Sapphire Garcia-Lies is working to bring awareness to racial disparities in infant mortalities and equity to perinatal health in Kansas.
Garcia-Lies’ daughter died in utero one week before her due date, from what Garcia-Lies described as medical negligence. She said concerns about her daughter not moving much toward the end of her pregnancy were repeatedly downplayed by medical professionals.
Since then, Garcia-Lies founded the Wichita Birth Justice Society and became a doula — a professional support person for the mother — to advocate for women of color and their babies. In her work with clients of color, she has seen stories like her own time and time again.
“The system is very unwilling to listen to their needs, to acknowledge those needs. When someone does fall through the cracks, it is blamed on the parents, it is blamed on the family, rather than acknowledging that we have a system in place that does not offer equitable support to families,” Garcia-Lies said.
Studies done in past years have demonstrated Black and Hispanic Kansas communities experience infant mortality at a much higher rate than their white counterparts. A newly released Kansas Infant Mortality and Stillbirth Report by the Kansas Department of Health and Environment shows that while the number of infant deaths reported is the lowest on record for the state, disparities in infant mortality rates among these vulnerable populations persist in 2019.
The infant mortality rate decreased from 6 infant deaths per 1,000 live births in 2018 to 5.3 infant deaths per 1,000 live births in 2019. The overall trend for infant mortality has been decreasing since 2007.
However, Black births experienced nearly triple the rate of infant deaths where the cause was sudden and unexpected than white and Hispanic births. Hispanic and non-Hispanic Black births also experienced higher rates of infant deaths where the cause of death was short gestation and low birth weight.
It is not race that is killing these babies but “racism that is baked into the system,” Garcia Lies said.
“There’s an urgent need to redesign and re-imagine our health care and social safety net systems with a central focus on equity,” she said. “We have to acknowledge that the events of the past have a legacy that continues to impact the health of people of color still today — yesterday’s redlining map overlaps with today’s food deserts.”
A bill championed by Garcia-Lies would have required KDHE to establish an external review committee to look over black maternal death cases. House Bill 2108 died in committee after it did not receive a hearing.
Heather Braum, health policy adviser for Kansas Action for Children, echoed Garcia-Lies’ call for equity within the health care field. She said for whatever reason, be it implicit bias, lack of cultural competency or clear-cut racism, these mothers of color are not being listened to.
In addition to requiring more cultural and racial-specific training of medical professionals, Braum offered health care policy changes needed to improve the situation.
“One policy change is Medicaid expansion and getting access to health care and then partnered with expansion is this new opportunity to expand postpartum coverage beyond the 60-day period,” Braum said. “A lot of research shows it’s not enough to have insurance coverage for up to 60 days as a lot of things happen between that 60-day mark and one year.”
Braum said access to health care is critical because a child’s health is directly tied to a mother’s well-being.
Rachel Sisson, director of the KDHE Bureau of Family Health, said improving maternal health is critical to improving birth outcomes and further reducing infant mortality in Kansas.
“Further, eliminating disparities in infant mortality starts with addressing social determinants of health for the mother by ensuring access to care, individual and family supports, education and maternity care practices that promote breastfeeding and safe sleep,” Sisson said.
On a community and individual family level, beginning to address these disparities and the infant mortality rate issue comes through education, said Christy Schunn, executive director of the Kansas Infant Death and SIDS Network. Much of Schunn’s work is focused on creating a safe sleep environment to reduce sleep-related death or asphyxia strangulation in bed.
She said the KIDS network is also focused on researching new ways to deliver this message, how to get people to practice safe sleep and how to ensure more mothers have access to prenatal care.
“Infant mortality is an indicator of the health of a community,” Schunn said. “So I think of these children that died before their first birthday as our children, not just theirs. This is our future that we’re talking about.”
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