Brightly colored chalk covers the sidewalk outside the Burkeys’ home in west Wichita.
There are ABCs and names: Mama, Daddy, Kamben and Maxton.
Kamben is a toddling 19-month-old. He likes “Thomas the Tank Engine” and “SpongeBob SquarePants.”
But Maxton will forever be 7 weeks old to his parents, Kelci and Kevin.
On May 17, 2011, Maxton stopped breathing.
He was one of 247 Kansas infants who died that year – and continue to die each year, as the state’s infant death rates exceed the national average.
In May 2011, Maxton was at his second day at a home day care. Though the sitter had done everything right – he was on his back, alone in a crib – when she checked on him, he was blue.
Emergency responders were able to resuscitate him. But nine days later, the Burkeys made the painful decision to remove him from life support.
“The only brain activity he had were seizures,” Kelci Burkey said. “He didn’t do any of the normal things. He didn’t have the pupil response or show any perception to pain. He didn’t have any of that.
“It was really hard for us, and that is not an easy decision that any parent should have to make. But as parents, we knew that that wasn’t Max,” she said. “Max was – he never smiled – but he was a happy baby. He was always sticking out his tongue. Seeing him lay there like that, that wasn’t Max.”
Authorities recorded the official cause of death as Sudden Infant Death Syndrome.
“We were mad,” Kevin Burkey said. “We wanted a reason or a why and that’s nothing. That’s completely inconclusive.
“Basically, they don’t know that it’s anything else. It was hard to hear.”
That’s the heartache behind the numbers.
Although the state of Kansas had record-low infant death rates in 2011, the rate increased 2.8 percent in 2012, when 254 children in Kansas died before their first birthday.
For some groups, such as African-Americans and residents in rural areas, the rate of infant deaths is even higher.
Longer term, rates for infant deaths in Kansas have steadily declined since the state began tracking the numbers more than 100 years ago. Generally, worldwide, infant mortality rates decline as health care, living conditions and nutrition improve for mothers and their children.
“We consider every infant death a sentinel event and something to pay attention to,” said Greg Crawford, Kansas Department of Health and Environment’s director of vital statistics data analysis.
The estimated rate of infant deaths for the U.S. in 2013 is 5.9 out of 1,000 live births, only slightly better than countries such as Croatia and Bosnia, according to the CIA World Factbook.
The U.S. ranks 50th best of 224 countries, worse than Hungary (5.16), Japan (2.17) and most of Europe.
According to the Kansas Department of Health and Environment, the overall Kansas resident rate was 6.3 infant deaths per 1,000 live births in 2012.
One statistic that has especially troubled Kansas health care providers is the historically high rates of mortality for black infants. It’s still about three times higher than whites, even though all of the rates have declined over the last 20 years.
There are also differences in rates between rural and urban counties. State statistics for 2012 show that rural and densely settled rural areas have higher rates than urban counties.
Reducing SIDS risks
The factors behind infant deaths are complicated, said Christy Schunn, executive director of the Kansas Infant Death and SIDS Network, a nonprofit support network based in Wichita that provides services to families across the state and works to raise awareness of sudden infant death.
“The death of a child is a complicated loss,” Schunn said. “It is unnatural. Our societal norms are that older people die and that parents die before children.
“So it’s an unnatural process to have a child die before a parent. We don’t anticipate that, and we have no preparation.”
In 2012, the leading cause of infant mortality in Kansas was prematurity or low birth weight, followed by congenital abnormalities and SIDS or suffocation in bed.
Although most people have heard of Sudden Infant Death Syndrome, it is more a description than a cause, and is not well understood by medical researchers.
The number of cases classified as Sudden Infant Death Syndrome in Kansas has decreased over the last 15 years, Schunn said. But what is happening, she said, is a recategorization of infant deaths, where the death is listed as undetermined instead of as SIDS.
“This is a national trend as well,” Schunn said. “If there is a loose blanket in the bed, a pillow in the bed or the baby is in an unsafe position, it’s difficult to determine if the cause of death was SIDS or due to that item in the bed.
“There are SIDS deaths and there are sleep-related deaths, and so the actual SIDS number has gone down but infant mortality has not.”
Research on SIDS has increased in the last 10 years, Schunn said. Although there is no way to completely guard against SIDS, there are ways to reduce risk.
“If you put a baby on its back, alone in a crib in a smoke-free environment, you reduce the risk,” she said. “But there’s still a potential that you can do all of the risk reductions and the infant will still die of SIDS, and that’s where the research is needed to find out exactly what’s going on with the brain stem, with the way the baby is breathing and functioning.”
Schunn said research has determined that SIDS is often the result of a combination of several things happening at the same time: an underlying abnormality in the infant, its age and an additional stressor.
“Say we have a baby with a brain stem abnormality, we have a baby that is vulnerable because of their age, and then when that is combined with a third stressor – which could be a blanket, a smoking environment, a position on the tummy or the baby getting too warm – those factors coming together at the wrong moment is when we have SIDS.”
First, healthy women
Over the last several years, health care providers and public officials have formed several groups to address Kansas’ infant mortality rates, including the Kansas Blue Ribbon Panel on Infant Mortality and the Sedgwick County Fetal Infant Mortality Review board, which has a case review team that talks about every infant mortality death in Sedgwick County.
The Sedgwick County Health Department has the Healthy Babies Program, a free program for pregnant and new moms that offers home visits from nurses and teaches things like safe sleep, breastfeeding, relationships, how to quit smoking, basic baby care and preventing early birth.
“Thank goodness for local health departments. That is where the work is getting done,” said Crawford, the KDHE official. “They develop local solutions and identify the needs of the community and respond.
“That’s the best effect we can have to move infant mortality downward.”
For local health department officials, the issue and its solution are complex.
“There’s a lot of social determinants and social factors that influence these health outcomes, and all of the health outcomes and disparities in the community,” said Roderick Harris, division director for children and family health at the Sedgwick County Health Department.
“So we can do our part as a health department as the Healthy Babies program to influence it – but we can’t do it all.”
One major issue is access to prenatal care.
“We need healthy women to have healthy babies,” Schunn said. “We need to have healthy young girls to become healthy young women to have healthy babies.
“It’s astonishing to me that the infant mortality rate is so high based on the number of programs and medical knowledge that we have. It’s a puzzle trying to get to the bottom of why the rates are so high.”
Kamben, at 19 months, is past the age for SIDS, but Kelci Burkey still checks to make sure he’s breathing during the night.
She calls him their Rainbow Baby.
“A Rainbow Baby comes after the storm,” she said. “It doesn’t mean the storm didn’t happen or wasn’t terrible, but something good can come out of it, and that was Kamben for us.
“We were scared and happy more than anything, but Kamben was hope for our families. It told them, ‘Hey, they’re going to make it.’”
“We have nieces and nephews and friends with kids in the same age group as Max, so we always wonder, ‘Would he be doing that, too?’ or ‘What would he be saying right now?’” Kevin Burkey said.
“A lot of ‘What ifs?’”
The Burkeys try to look at the positives. They were able to donate Maxton’s heart valves. And through a fundraiser, they helped the Hoisington ambulance service get equipment to help infants. They both grew up in the Hoisington-Great Bend area.
Kelci has also pursued her dream to become a physician’s assistant. She had tried twice to get into the program at Wichita State University before Maxton died.
“We were in the hospital for nine days and had incredible nurses, PAs and physicians for the worst days of our lives,” she said. “It reiterated why I wanted to be in medicine.
“We left and Kevin said, ‘You will apply again because this is what you’re supposed to do.’ And that year I got in. I will graduate in July 2014.”
They’ve also come closer together.
“They say a lot of times this can break marriages apart, but in all honesty I think that Max has made us nothing but stronger,” Kelci said.
“We really had to be in tune with each other. When Kevin was having a bad day, I knew it was just a bad day. It wasn’t because of me, it was because our son had died. I still have really bad days and Kevin rescues me and says we’re going to be OK.”
Kevin wears a necklace and Kelci wears a ring with Maxton’s fingerprint.
“I got to spend two months with my son,” she said. “The best two months I’d ever had, and I got to spend them with him.”