A Wichita mom put her healthy 4-month-old daughter down for a nap on May 27 last year. When she checked later, the baby wasn't breathing. Attempts by doctors to revive her failed, and Mariah Thomas was pronounced dead, a victim of sudden infant death syndrome.
Mariah's grandmother, Teresa Cole, is a crisis intervention expert who helps victims of violent crime. But even that background didn't prepare her for the impact of Mariah's death. "We're all still grieving," she said.
Mariah had siblings ages 2, 3 and 8. The 3-year-old, Cole said, will look up in the sky and say, "Mariah's in heaven."
Mariah's death is part of a trend that has alarmed state health officials. The National Center for Vital Statistics ranks Kansas the worst state in mortality rate of black infants. The rate is based on babies who die within their first year.
"I like to believe Kansas is No. 1 in a lot of things, but not this," physician Robert Moser, secretary of the Kansas Department of Health and Environment, said at a recent event in Wichita to raise awareness of the problem. "This is something we can no longer ignore."
The national mortality rate for all babies was 6.24 infant deaths per 1,000 live births in 2009. The rate for Kansas was 7.01 and for Sedgwick County 8.32, according to the most recent figures published by the vital statistics center.
Of 8,293 total births in the county in 2009, 69 babies died.
Sedgwick County has one of the highest black infant death rates nationwide, local health officials said.
The mortality rate for black infants in the county was more than three times higher than for white infants between 2000 and 2009.
According to KDHE, 167 black babies died during that time out of 8,965 births in the county, a rate of 18.6 per 1,000.
Over the same period, 380 white babies died out of 58,665 births, a rate of 6.5 per 1,000.
Theories about the disparity focus on differences in teen pregnancy rates, rates of single parenthood, education levels, economic class, access to health care, and racism. Level of awareness about proper prenatal care and about the effect of bad habits like smoking, drinking and using drugs are cited by health officials as well.
Some causes of infant mortality
State and local health officials brought Tonya Lewis Lee, a TV producer and author, to Kansas for a three-city tour as part of the Office of Minority Health's infant mortality awareness campaign last month. Kansas' high ranking didn't shock her.
"It is surprising, but not all that surprising," said Lee, wife of film director Spike Lee, before speaking April 20 at Wichita's St. Mark United Methodist Church.
"My guess is that certain communities in Kansas are fairly segregated. So what are those African-American communities looking like? Are there grocery stores there? Are there safe places for people to exercise?"
Lack of nutrition, poor access to health care and poor care once women do get to a doctor are factors, said Lee, who has worked on the issue for several years.
But fewer resources and greater incidence of poverty aren't the only reasons.
"Black women lose their children more than white women regardless of their economic background or their educational background," she said.
"Research shows social stressors tied to racism are an issue in the forefront," said Susan Wilson, director of the Sedgwick County Health Department's Healthy Babies program.
College-educated, career- oriented black mothers have poorer outcomes than college-educated, career-oriented white women, she said.
SIDS, one of the leading causes of infant mortality, is twice as likely to claim black babies as white babies, said Christy Schunn, executive director of the SIDS Network of Kansas.
Black babies are more likely to sleep in a bed with another child or an adult, which increases the risk of oxygen deprivation, she said.
SIDS, the sudden, unexplained death of an infant younger than 1 year old, remains a mystery, but research shows that if a baby's brain stem is immature or malformed, the brain can shut down when it isn't getting enough oxygen, or if the baby becomes overheated, Schunn said.
Babies need to sleep alone in a crib, on their backs, without toys, stuffed animals, bumpers, blankets or pillows, which can deprive them of air, she said.
That message needs to spread to older generations of child-care providers such as grandparents, who may still encourage tummy sleeping because that's the way they raised their children.
"There's a pretty good chance all of us adults slept on our tummies," Schunn said. "The thing we don't realize is, twice as many babies were dying back then."
According to KDHE, other leading causes of infant mortality are birth defects, pre-term and low-weight births, and maternal complications during pregnancy.
Preventing infant death has to start during puberty, when prospective mothers begin to make choices about their health and habits such as drugs and alcohol, Wilson said.
"We have to show them that choices they make now impact their future," she said.
"The bottom line is, there are teens every day having sex in Sedgwick County that are not protecting themselves, and they don't know which way to turn. You can see it go from generation to generation."
Healthy Babies, at 434 N. Oliver, offers classes, group sessions, counseling, education, material needs such as diapers, transportation, and even home visits.
Faith Shellman, 21, saw the Healthy Babies sign while driving down Oliver one day and decided to stop. She was pregnant with her daughter, Leilani, now 10 months old.
She became one of about 1,300 mothers served by the program in the last year.
"Not only did they give me education on self-care during and after the pregnancy," said Shellman, a student at Butler Community College, "they also helped with diapers, nutrition, wipes, the things I wouldn't have been able to afford."
Those items aren't given away. Mothers are held accountable for their own care and must earn items through an incentive program based on things such as attendance at classes and group sessions.
Shellman said the program has given her emotional as well as material support. Her pregnancy and birth were normal, but respiratory and blood disorders have sent Leilani to the hospital twice in the last month.
It's been a difficult month. But Leilani might not have received the medical care she needed. Staff at the Healthy Babies program urged the hospitalizations.
"Just telling the nurses and staff her symptoms, they were able to give me advice on what it could be. I didn't know what to tell the doctor," Shellman said.
Other prevention steps
The Kansas Blue Ribbon Panel on Infant Mortality, formed in 2009, released its "Road Map for Preventing Infant Mortality in Kansas" in February.
A goal is to have community-based programs operating within the state's high-risk ZIP codes by 2012. In Wichita, 12 ZIP codes had 20 or more infant deaths from 1998 to 2007.
Five ZIP codes in the state had more than 20 deaths of black infants in the same period, including three in Kansas City, one in Topeka and one in Wichita.
The panel also hopes to launch a public awareness campaign by 2012.
The panel expects a slow road.
Behavioral improvements such as decreases in maternal smoking and drug use and increases in exercise and healthy eating are among goals for 2015.
Reducing the infant mortality disparity between racial groups is a goal for 2020.
At the panel's urging, the Kansas Legislature last year passed a bill allowing health surveyors to gather more data from mothers who lost babies in the first year of infancy.
A national Fetal-Infant Mortality Review program already surveys families that have lost babies. Schunn is the only interviewer for the program in Sedgwick County.
She asks questions about prenatal care, pregnancy experiences, birth experience and the baby's time at home, if they lived there, she said. Interviews are voluntary and confidential.
"What we're trying to do is gather information about their experiences and find places where there are gaps, or indicators, where we as a community could enhance services to reduce infant death," Schunn said.
She started the interviews 10 months ago and has done 20 to 24, she said. That's not enough yet to identify trends.
"We need more data. You need to see several years before you see trends," Schunn said. "But we're definitely seeing heightened areas of indicators."
The need for mothers to quit smoking is one of them, she said.
Her information is passed along to a case review team of medical professionals who identify the gaps and indicators. Then a community action team can begin working on the issues. Many organizations are partners in the effort, Schunn said.
With state and local budgets being trimmed, grassroots collaborations by local organizations such as churches and health officials are vital, Moser said.
"I think we're all going to have to come together and work on this," he said.