For Waylon Schaefer, there would be no baby shower and no nursery.
I couldnt come home to a house with a nursery and no baby, said Amanda Schaefer, a sixth-grade teacher at Emporia Middle School who found out when she was 25 weeks pregnant that her son, Waylon, had a congenital abnormality that kept his diaphragm from developing properly. His chances of survival were about 50-50.
I held off completely once I found out how sick he was, Schaefer said.
I hate to say it was mothers intuition, but I knew something wasnt right. With my daughter, everything was done. The bedroom was finished and ready to go.
At 32 weeks, she went into pre-term labor and was transported from Emporia to Kansas City with her husband, Hoyt, to have their son.
Waylon was born on March 3, weighing just 3 pounds, 11 ounces. Doctors tried for 30 minutes to stabilize him, but he died.
In Kansas, infants die at higher rates than the national average. And the infant mortality rates in Kansas are higher for babies born to women who live in rural and densely settled rural areas compared to infants born to women who live in frontier (less than six people per square mile), urban and semi-urban areas, according to state vital statistics data from 2008 to 2012.
The Schaefers live in Lyon County, which is considered a densely settled rural area, with 20 to 39.9 people per square mile.
Although the rates are higher for those rural areas, about 70 percent of the states infant deaths last year occurred in semi-urban and urban areas.
Kansas has struggled to improve infant mortality rates over the past couple of decades. Although the states rate of infant deaths has improved over that time, as has the countrys in general, Kansas still exceeds the national averages for infant deaths.
The overall Kansas resident rate in 2012 was 6.3 infant deaths per 1,000 live births, according to the Kansas Department of Health and Environment. The estimated national rate for 2013 is 5.9 deaths per 1,000 live births, according to the CIA World Factbook.
In rural counties, where there may be relatively few births, even small increases in the number of deaths year to year can look drastic because of the smaller population. To help combat that, public health officials often look at numbers on a five-year rolling average to find trends.
In a small county like in western Kansas, 12 infant deaths can be a really high rate, said Greg Crawford, Kansas Department of Health and Environments director of vital statistics data analysis.
For instance, Rawlins County in northwest Kansas, which has a population of about 2,500, had the highest infant death rate on average from 2008 to 2012, but it had a total of three infant deaths during those years.
Access, prenatal care
Women in rural areas often dont have the same access to care as women in more urban areas.
Of the roughly 40,000 live births in Kansas last year, nearly 18 percent of pregnant women received inadequate or intermediate prenatal care, according to state data. Lower levels of care were more likely to occur in rural areas than in urban areas.
Among the counties with the highest rates of inadequate prenatal care, according to state data, were Chautauqua, Comanche, Edwards, Finney, Grant, Greeley, Hamilton, Kearny, Meade, Seward, Stanton, Trego and Wichita most of which are in western Kansas.
Three of the five counties with the highest birth rates in the state are in southwest Kansas: Finney, Ford and Seward. The other two are Wyandotte and Geary counties.
Statewide, more than 2,100 women who gave birth in 2012 didnt seek prenatal care until they were at least six months pregnant, according to the KDHE report. More than 350 women never sought prenatal care before birth.
Socioeconomic disparities, including insurance coverage, also play a role in how and when women seek care during pregnancy.
Christy Schunn, executive director of the Kansas Infant Deaths and SIDS Network, said it can be difficult to get information about safe sleep practices and other prenatal care to women who live in rural areas.
Access to health care seems to be a concern, she said. I talk to a lot of families who have had infants die, and they didnt have medical insurance and by the time they got insurance, they were halfway through their pregnancy. We need early prenatal care.
According to the Kansas Health Institute, those who live in western Kansas counties are more likely to be uninsured.
In cases where rural families know they are at risk of having complications with either the delivery or the baby, the distance to a neonatal intensive care unit also can play a role.
If transported, it may be two or more hours before they can get to a Level 3 NICU, said Diane Daldrup, state director of programs and government affairs for the Kansas chapter of March of Dimes. In those rural communities, they may not have a hospital at all and certainly wont have a high-level NICU.
For those pregnancies they know are going to be difficult deliveries, where maybe the mom needs to deliver at a facility that has more intense services, you see some of those births directed to Wichita hospitals or to Topeka or Kansas City, said Crawford of the KDHE.
(Rural) hospitals make a good effort to do that, but the risk factors are those deliveries that they thought were going to be fine and something happens where they cant really quantify it until things are starting.
For lower-income families who know there will be a complicated birth, it can be financially difficult to go to city with an NICU and wait for the baby to come, Daldrup said.
Folks might not have money for hotels, and they need a place to stay while they wait, she said.
Infant mortality is a reflection of community health, and the health of the mother is a key indicator of how healthy a pregnancy will be, Daldrup said.
Prematurity is one of the top factors for infant mortality. Some of the main factors associated with premature births include the age of the mother, with higher risks for younger and older women; infection; carrying multiples; high blood pressure; stress; late prenatal care; and using tobacco or other regulated substances.
In 2012, more than 5,400 pregnant women in Kansas smoked at some point during their pregnancy. On average, maternal tobacco usage rates at any time during pregnancy are lower in urban areas, according to KDHE data.
(Smoking) is one of the highest factors in low birth weight and premature babies, Daldrup said. And if those babies go home to where parents are still smoking, it has a detrimental impact on them. Those babies die of SIDS more often.
In 2012, the counties with the highest percent of maternal tobacco use greater than 25 percent at any time during pregnancy were Allen, Atchison, Brown, Chautauqua, Cherokee, Cloud, Norton, Rooks, Russell and Stafford.
Higher instances of teen pregnancy also lead to higher rates of premature births, Daldrup said.
Teen pregnancy rates have steadily decreased throughout the state, and 2012 with 3,331 teen births had the lowest pregnancy rate for women under 20 in at least the past 20 years.
The highest rate for births to unwed teens is in frontier counties those with less than six people per square mile.
(Teens) dont have the same social support adult women have in many instances, Daldrup said. If they are in high school, they may have lost peer relationships because theyre pregnant, and sometimes they lose family support because of the issue.
If teens get into social support groups, they have much improved birth outcomes. They want to invest in their own pregnancy and take better care of themselves.
Keep me going
But even when families work to do everything right to ensure they have healthy babies, things can still go wrong.
In El Dorado, Anna and Noah McLaughlin were stunned to find out they were having twins.
We had just wanted one more, but God gave us two, Anna McLaughlin said. It was a shock, and we were just so overwhelmed and excited and scared and nervous all in one.
She went into pre-term labor at 32 weeks and had a boy, Tristin, and a girl, Rustin, on July 9, 2011.
Tristin had a metabolic disorder and was in NICU for two weeks.
At 5 weeks, he came home. Everything was going great, getting into the groove of having two babies and (our oldest daughter) Harley, who wasnt even 2 yet.
When Tristin was 5 months old, Anna McLaughlin laid him down for his afternoon nap.
When I went to get him, he was gone. I started yelling for Noah, and he did CPR and everybody came, but it was too late, she said.
They held the funeral the day after Christmas.
I dont know how she does it staying here where it happened, Noah McLaughlin said of his wife, who is a homemaker.
I get to go to work every day and get away from here. Even now, almost two years later, if I have a day off, I just cant hang around here. Its just an uneasy feeling of what happened.
One thing thats hard is youre trying to grieve, but I have other little girls to take care of, so I have to buck up and take care of them, Anna McLaughlin said.
But in another way, its a blessing to have them to keep me going and not just be stuck in a dark place. We have a great church family thats helped us, and our faith has helped us a lot, knowing that even though we think were better caretakers, Christ is the ultimate caretaker.
We go out and visit Tristin. We know where Bubba is, right? she asks her daughters Harley, 3, Rustin, 2, and Hope, 10 months.
And every year around Tristin and Rustins birthday, the family goes to the cemetery and releases balloons.