Kansas Health Institute | Information For Policy Makers. Health for Kansans.

TOPEKA — The odds of a baby dying before its first birthday are higher in Kansas than in most places in the U.S. But health experts aren’t sure why that is. And efforts to reverse the trend are moving slowly.

The statistics have been alarming for at least the past six years, with Kansas currently ranked 40th worst overall among the U.S. states for infant deaths. The Kansas death rate for black infants is the worst in the nation, according to the National Center for Vital Statistics.

"I don't think Kansans have any idea that we're much worse than what the U.S. averages are,” said Dr. Dennis Cooley, a Topeka pediatrician and chairman of the Kansas Blue Ribbon Panel on Infant Mortality. “And I don't think people look at it as our kids are dying — it's somebody else's babies that are dying. Until we as a society say these are our babies, I'm not sure that it's going to get the priority it should."

For every 1,000 white births in the state, about seven babies die. For every 1,000 black births, 19.6 babies die. The national rates are 5.6 and 13.2, respectively.

In 2007, which is the latest available data, 333 Kansas infants died before their first birthday. Of those, 57 were black — 17 percent. About 7 percent of Kansas’s births that year — 2,937— were black.

Cooley said Kansas ranks poorly within the United States, and the United States ranks low among the world’s industrialized nations.

"It's a crime that our infant mortality rates are as high as they are. There's no reason. We're the greatest country in the world and yet we have more babies dying in our country than in others," Cooley said.

The causes of infant death are many and vary community to community, Cooley said. Reversing the trend, he said, will first require collecting geographically specific data on the health of expectant mothers and the environments and neighborhoods in which they live.

For example, more needs to be known about how mothers eat and exercise, whether they smoke or drink alcohol, their stress levels, home environment and other factors.

Until last year, Kansas law effectively prevented state health officials from gathering much of that information because it denied them the ability to use personal information from birth certificates to contact new mothers, hindering their ability to survey for answers about how their pregnancies had gone.

At the urging of the Blue Ribbon Panel, lawmakers last year changed that.

Legislators were told the changes also would make Kansas eligible for federal funds to collect the data. The Pregnancy Risk Assessment Monitoring System, or PRAMS, is a Centers for Disease Control and Prevention program that funds state agencies to survey mothers before, during and shortly after pregnancy.

Collecting such data in Kansas is a necessary first step before state resources are deployed to try to bring down the mortality rates, said Dr. Robert Moser, secretary of the Kansas Department of Health and Environment.

Launching prevention programs without first having that survey information, he said, "may lead you off into the wrong intervention that's really not going to be effective."

Moser said Kansas must, "find more of the reason behind that before we start throwing effort and money into something that may not be the best way to use those resources."

Gathering data

But KDHE officials recently learned the application they submitted to CDC in January seeking a $153,393 PRAMS grant was denied.

KDHE spokesperson Miranda Myrick said the agency would not be able to collect the data absent the grant.

"We don't have the resources for investing in staff for that, so at this point we're not going to be able to implement PRAMS," Myrick said.

Gov. Sam Brownback has said one of his administration’s priorities is to encourage a “culture of life,” in Kansas. But he also has made clear that he intends to hold the line on state spending.

Asked if the governor supported using state dollars to fund the survey effort or otherwise tackle the problem of infant mortality, spokesperson Sherriene Jones-Sontag said, “accomplishments in the area of reducing infant mortality require a strong, stern look at the factors to determine where resources would best be utilized.”

She said the administration intended to work with the Blue Ribbon group.

“While we were disappointed the federal government decided to not work with Kansas in this effort, we are pleased with the work of the Kansas Blue Ribbon Panel on Infant Mortality and continue to partner with these experts in order to decrease public health risks.”

Cooley said government, given the current political and economic climates, could not be counted on to fund the needed prevention programs.

"You can't rely on the state to provide money for these programs,” Cooley said.

“With everybody cutting back on government spending, you just can't rely on it. These have to be community-based programs and there will have to be ways for the community...to fund some of these.

“That's part of the reason that the community as a whole has to buy into it,” he said. “If they don't know about it, how are they going to buy into it? Awareness is that first big part of this.

"Dr. Moser (at KDHE) is aware of the situation, we've talked to him about it. And in that view, I'm sure Gov. Brownback is, too. But a lot of other people in government may not be," Cooley said, referring to the Legislature. "Quite frankly, they're the ones who vote on money they're going to appropriate for things like that. Are they going to set this as a priority? I don't know."

Next steps

Cooley said the lack of federal funding for the PRAMS surveys would not slow the Blue Ribbon panel's work.

"Certainly it's a disappointment,” he said. “But I don't think it's going to keep us from getting other things going that follow our plan."

He said the next steps would be determined at the panel's upcoming meeting, April 29.

That includes considering other ways to fund data collection, a public awareness campaign and the panel’s other priorities absent state and federal dollars.

"Private foundation (funding) is something we've talked about looking at and I think we're going to have to do it. That's probably something we're going to be discussing at the next meeting,” Cooley said. "We haven't asked for any kind of funding from anywhere yet…we were waiting to see what would happen with PRAMS.”

Other survey

PRAMS involves interviewing thousands of mothers annually using a 50-page survey (PDF). That makes it among the most comprehensive means of gathering infant mortality information. But it is not the only program.

Another is The Fetal and Infant Mortality Review, or FIMR, a survey-based program used to collect information from mothers who have recently had a baby die. Like PRAMS, the FIMR program was made possible in Kansas as a result of last year’s legislation.

So far, Christy Schunn is the sole interviewer for the new Wichita-based review program. For now, she does the interviews as part of her job as Executive Director of the SIDS Network of Kansas, Inc., a non-profit group that offers bereavement support as well as infant mortality prevention education in Sedgwick County.

"I ask them what their environment was like, what their job was like, what kind of stress did they have," Schunn said. "With that kind of data, we can home in on what can we do differently."

Schunn began interviewing in June and said she's on track to do about two dozen interviews per year.

"The hope is that Sedgwick County can hone the process and then share it with other communities," she said.

Schunn said the Kansas City area also has a FIMR program that plans to expand as resources become available.

What is known

Much is already known about infant mortality in Kansas. According to KDHE's Bureau of Epidemiology and Public Health Informatics, the leading causes of deaths include:

• Birth defects (23 percent),

• Preterm and low-weight births (17 percent),

• Sudden Infant Death Syndrome, or SIDS (15 percent) and

• Maternal complications during pregnancy (11 percent).

Also, two-thirds of Kansas infant deaths are neonatal, or within the first 28 days of life. The rest occur between ages 28 days and one year.

Broadly speaking, Cooley said, the field of contributing factors is also known.

"Truly, we've known most of these factors for 100 years or so. It's not like they're new. The thing about it, though, is that each community has a different set, or certain factors are more important in this community than in that community," he said.

Among the approaches known to help reduce infant mortality are:

• Improved education,

• Increased consumption of folic acid by pregnant women,

• Early and adequate prenatal care,

• Eliminating alcohol, tobacco, or illegal drug use,

• Decreased teen pregnancies,

• Increased care for high-risk pregnancies,

• Promoting prenatal weight gain and nutrition,

• Safe sleep position and environment for infants,

• Adequate immunizations for mothers and infants,

• Increased breastfeeding,

• Social supports to improve mental health and reduce chronic stress,

• Interventions to stop family and domestic violence, child abuse and neglect,

• Elimination of harmful environmental exposures, including tobacco smoke and

• Decreased poverty.

Knowing which of these factors is most significant in each community should help in tailoring the most effective responses, Cooley said.

"You have to know on a community-wide basis what are causing higher infant deaths. We're not going to solve this on a statewide basis. There's not going to be some statewide program. It's got to be done on a community level. And the only way a community can change those factors is if they know what the factors are."

Related stories:

→ Kansas black infant mortality rate worst in the country

→ Road map sets goals for reducing state's alarming infant mortality rate

→ National spokesperson on infant mortality to tour Kansas

Crisis in the Crib: Saving Our Nation's Babies from Kansas Health Institute on Vimeo.

Infant Mortality for the African-American community is a pressing, but often overlooked, health disparity. The rate of death for black babies before their first birthday is twice the rate of white babies and greatly outpaces the national average. For some communities these deaths can seem like a normal part of life, but they are strong indicators of the health of the community. Produced by the Office of Minority Health, U.S. Dept. of Health and Human Services