Local programs work to reverse statistics, support mothers as state develops infant mortality plan
Shortly after Demekia Kincaid’s second child, Lamar, was born, she noticed something was wrong. As a hospital staffer bathed the newborn, his breathing seemed different, like he was breathing hard. Though she was assured he was OK, the problem only got worse.
“I called them back in there, and they took him right upstairs,” the Asheville mom said.
Lamar spent seven days in Mission Hospital’s Neonatal Intensive Care Unit. He’s now a healthy 15-month-old who loves to shout, “Stop!” Kincaid said with a laugh. And she said he’s not expected to have any long-term effects from the problem.
Kincaid, 22, who expected to deliver her third child in June, takes part in a local nonprofit program specifically aimed at improving birth outcomes for African-American women — which, among other things, encourages them to speak up for their own health and that of their babies.
Statistics show that her son is one of the lucky ones. In North Carolina, African-American babies are dying before their first birthday at about two-and-a-half times the rate of white babies. The numbers are only slightly better in Buncombe County, with African-American infants twice as likely to die before their first birthday than white infants.
These jaw-dropping statistics don’t often make it into the public discourse.
”The babies are dying because they’re born too small or too soon,” said Belinda Pettiford, head of the women’s health branch in the N.C. Department of Health and Human Services’ Division of Public Health. “Those are the (top) two reasons we have high infant mortality rates in our states. Those are not the babies you hear about.”
Other main causes of infant mortality include birth defects, Sudden Infant Death Syndrome, maternal complications of pregnancy and injuries such as suffocation, according to the Centers for Disease Control.
“North Carolina has seen great improvement overall in our infant mortality rate,” Pettiford said. “But nationally, we are in the top 10 of having the worst infant mortality rate in the country.”
Southern states have among the highest infant mortality rates in the United States, which in turn has one of the highest rates among other developed countries. Infant death rates are seen as a measure of a nation’s overall health, since the same factors that affect the entire population can affect the mortality rate of infants.
In 2012, North Carolina’s overall rate was 7.4 deaths per 1,000 live births, compared to the national average of 6 deaths for every 1,000 babies born alive, according to the N.C. Healthy Start Foundation.
For African-American babies, 13.9 died for every 1,000 born alive in 2012. The white rate stood at 5.5 deaths for every 1,000 births.
And for reasons not fully understood, according to Pettiford, the Hispanic infant mortality rate in the state was lower than the white rate, at 4.2 deaths per 1,000 births in 2012.
Despite the grim figures, North Carolina’s overall numbers are significantly better than in 1988, when the state’s infant mortality rate was the second highest in the nation (behind Georgia), at 12.6 deaths per 1,000 births, according to the State Center for Health Statistics.
Yet, until racial disparities improve, the overall rate will be difficult to bring down, Pettiford said.
Efforts so far
Public health efforts — largely focused on getting pregnant moms into prenatal care — have made an impact on the overall numbers, officials say.
In Kincaid’s case, she’s encouraged to keep her prenatal appointments through her case manager at Project Nurturing Asheville and Area Families, a program of the nonprofit Mount Zion Community Development, which is based in Asheville and serves Buncombe County.
Women are encouraged to take steps to improve their health and that of their babies — including breastfeeding, eating healthier food, stopping or reducing smoking, taking folic acid between pregnancies and spacing their pregnancies, said Executive Director Belinda K. Grant. Begun in 1998, Project NAF is one of 12 state-funded Healthy Beginnings programs in North Carolina, serving about 40 women a year.
Support is offered through monthly one-on-one meetings with a case manager plus phone calls and referrals to agencies that can provide additional help. Case managers also accompany participants to prenatal and well-baby visits, coordinate transportation and host group support meetings for the moms.
“I just really like having our meetings ‘cause we all get to come together, and we all get to talk and know that we’re not by ourself,” Kincaid said.
The connection between participants and their case managers is evident.
“People don’t always care what you know, but they just want to know that you care,” Grant said. “It is a lot of hard work, but we do it because we believe in the participants.”
Other local programs take a similarly hands-on approach to supporting moms and their babies. The Nurse-Family Partnership through Buncombe County Health and Human Services is part of a national effort aimed at helping first-time, low-income mothers by pairing them with a nurse for home visits and other support for the first two years of a baby’s life, said Buncombe County Public Health Director Gibbie Harris.
More than half of the participants are teen moms, and many have mental-health and substance-abuse issues, Harris said. The nurse makes sure the mom gets to medical appointments and receives mental-health and substance-abuse treatment if needed. Teen moms are assisted in completing their education, and families — including the fathers — are encouraged to get involved as well.
“The purpose is to build a really solid base for that family to grow on,” Harris said.
Each of the five nurses works with 25 families, and the program is set to expand to add three more nurses, Harris said.
Meanwhile, YWCA of Asheville’s MotherLove program targets pregnant and parenting teen moms who are enrolled in high school or a GED program, said Holly Gillespie, interim coordinator of the program. MotherLove’s goals include increasing healthy births and encouraging the moms to complete their education.
“It’s rare that one of the baby participants spends time in NICU,” Gillespie said.
The program includes monthly home visits, trained mentors, monthly “Lunch Bunch” parenting education and resource sessions at seven area high schools, and other support.
“Our focus is on holistically helping the young mothers be good parents,” explained YWCA Executive Director Beth Maczka.
The program serves about 30 teen moms annually; about a third of are African-American, a third Latina and a third white, Gillespie said. An additional 70 parents and students attend the monthly Lunch Bunch programs.
Over the past 10 years, 100 percent of the program participants have graduated or gone on to the next grade, Maczka said.
“Keeping these girls in school is paramount to the child’s success, their long-term success,” she noted.
MotherLove participant Jocelyn Franks said she got pregnant at the beginning of her junior year, and had her son, Jasper, the following summer. Now 18, the Puerto Rican mom said she’s set to graduate from Charles D. Owen High School in June. Her part-time job at her son’s daycare center will become full time when she graduates, and she’s been accepted for the spring 2015 semester at UNC Asheville, where she’s thinking of majoring in early childhood education.
“The most valuable part is the fact that the program provides so much information about everything surrounding self care and child care,” Franks said. “I think a lot of people are misinformed or not informed at all, so having a program like MotherLove gives people a way to figure things out that is not that difficult.”
At the national level, North Carolina has been partnered with 12 other states with high infant mortality rates through the U.S. Department of Health and Human Services to address the overall problem, Pettiford said. The Collaborative Improvement & Innovation Network to Reduce Infant Mortality has developed five priorities: reduce elective cesarean sections before 39 weeks of pregnancy, expand access to care between pregnancies through Medicaid, reduce tobacco use among pregnant women, promote “safe sleep” practices and make sure babies are born at hospitals that can handle high-risk pregnancies.
Racism: The possible ’cause of the cause’
Even as progress has been made in the state to reduce the number of infant deaths, the challenge remains to make more headway in boosting the number of African-American babies who make it to their first birthday.
The reasons for the black-white gap are complex, public health officials say, and include poverty, access to prenatal care, the overall health of the mother — and the effects of racism.
Buncombe County Health Director Harris said that the county has a good prenatal safety net in the services offered by MAHEC, the Minnie Jones Health Center, Mission Hospitals, Community Care of Western North Carolina and Buncombe County’s Health and Human Services.
“What the data is showing us nationally, and consistent with what we’re seeing here, (is that) if we want to really start having a greater impact on infant mortality, we have to start going further back upstream and look at the health of women and their families before they get pregnant,” Harris said.
In fact, women’s preconception health ranks as the top priority area in the Buncombe County 2012 Community Health Assessment.
Part of understanding how to improve women’s health before they get pregnant includes looking at the effects of racism.
“Research indicates that racism is one of the contributing factors of the high black infant mortality rate, not just in North Carolina, but our country,” Pettiford said.
Racism causes chronic, toxic stress on the mother, Harris said.
“The data shows that exposure to the issues of racism impacts birth outcomes significantly,” she said.
That issue was explored in an influential 2010 research paper by Dr. Michael C. Lu of the UCLA School of Public Health (and five others), “Closing The Black-White Gap in Birth Outcomes: A Life-Course Approach,” published in the journal Ethnicity & Disease. The researchers cite two ways to explain the racial disparities in birth outcomes. One is that African-American women experience “greater exposures to stress hormones during pregnancy, early life, and possibly even in utero.” And the cumulative pathways model “proposes that chronic accommodation to stress results in wear and tear, or allostatic load, on the body’s adaptive systems, leading to declining health and function over time.”
That racism can have negative effects on health outcomes is no surprise to the YWCA’s Maczka, whose organization’s mission is eliminating racism and empowering women.
“We believe that racism and sexism is at the core of all these disparities,” Maczka said.
State developing infant mortality plan
Tackling racism is no small order, but will be part of the discussion as the state develops its new infant mortality plan.
The state women’s health branch is partnering with health care providers, community leaders, nonprofits and others to come up with a statewide plan that goes beyond the Division of Public Health, Pettiford said, with Lu’s research paper serving as a jumping-off point.
“Increasing evidence suggests racism may be the ‘cause of the cause’ of health disparities in the United States,” the report stated.
The researchers propose a 12-point plan to close the racial gap in birth outcomes that goes “beyond prenatal care to address the healthcare needs of African-American women over the life course.”
The researchers suggest that closing the gap in birth outcomes requires profound changes to social institutions and public policies to reduce “early life disadvantages and cumulative allostatic load over the life course” — including action to close the black-white education gap, reduce poverty and undo racism.
Whatever the approach, the urgency to take effective action remains.
“For overall infant mortality to improve in our state, we have to address the disparity,” Pettiford said.