Editor's note: An earlier version of this story contained an incorrect ZIP code for the Healthy Babies program.
Jerissa Roundtree lost her daughter 20 years ago, but the grief hasn’t faded.
“I took two little outfits to the hospital,” she said. “You’re never expecting to not bring both of your babies home.”
Roundtree’s twins, Avree and Avana, were born April 17, 1993, at 32 weeks. They were a little more than 4 pounds each.
After a sickly pregnancy, Roundtree – who already had a set of twin boys, as well as another son and a daughter – was excited to bring home her two new baby girls.
But she didn’t hear Avana cry when she was born at St. Joseph Hospital. Doctors told her Avana’s lungs were too small and hadn’t developed properly.
They whisked her away and hooked her up to machines to help her breathe, but the medical staff wasn’t hopeful.
Avana lived about seven hours, until Roundtree – who had gotten the awful prognosis from the doctors – told them to unhook her from the machines. She wanted to hold her daughter.
“She’s dying anyway,” she told the doctor. “I want her to die in my arms.
“And so they took her off of the little ventilator and the little monitor, and they handed her to me.
“They let me hold her as long as I wanted to.”
The Roundtree family has experienced much loss. Other relatives have lost infants to SIDS and an accident at home. Another had a stillborn son.
Their story is not unlike those of other black families in Kansas.
In 1993 – the year Avana died – the black infant death rate was about three times that of whites. Even today, it’s triple the rate for whites, though both rates have gone down.
“It’s still high and among the highest. It’s still happening, and it’s very frustrating,” said Jerissa Roundtree’s mother, 79-year-old Eddis Roundtree, who helped start the Black Nurses Association, which has worked to combat high infant death rates.
“When you think that it’s going down and you’re making headway, you find it goes back up again. We’ve seen change in cancer, diabetes, a lot of things we’ve focused on, but not infant mortality in our community.”
Eddis Roundtree said she never lost any of her seven children. She says she doesn’t know what she would have done if she had.
“We need to bring attention to this and make people think about why we are losing all of these babies.”
Causes of death
The leading cause for infant death varies among ethnic and racial groups. Among non-Hispanic blacks, the leading cause is prematurity or low birth weight, followed by SIDS, according to state data.
Some of the risk factors for low birth weight – which is defined as less than 5 pounds, 8 ounces – are obesity, smoking and lack of access to prenatal care.
For non-Hispanic whites, the leading cause is congenital abnormalities, followed by SIDS.
And for Hispanics, it’s congenital abnormalities followed by prematurity and low birth weight.
The state has not studied why the leading causes of infant death vary by ethnicity, said Greg Crawford, Kansas Department of Health and Environment’s director of vital statistics data analysis.
“We are trying to put a lot of information out there to empower local groups and give them the information they need and to make sure they understand the significance of it so they can act on it,” said Crawford, who noted that health outcomes for other conditions are often poorer across the U.S. for blacks than for whites.
“That is an unacceptable rate. We deal with those numbers and continue to try to reach the community.
“There’s a substantially smaller number of black births and much more in the way of unacceptable outcomes statewide.”
Access to care
Some of the more complex factors related to lack of access to care and infant deaths are social determinants, like poverty, discrimination and racism, health care experts say.
Preconception stress plays a role, said Teresa Lovelady, executive director of the Center for Health and Wellness, a safety-net clinic near 21st and Grove in Wichita.
“When you live in an environment that has so many negative societal factors hammering down – when you look at poor academic performance, when you look at crime rate, standards of housing, brain drain in certain neighborhoods – it creates an environment that breeds violence and has a lack of resources to support them even before they become pregnant,” she said.
Once they become pregnant, women often don’t know where to go, despite there being two major health systems and several clinics in town, Lovelady said. They also often don’t know how to enroll in Medicaid or when to seek care.
At the Center for Health and Wellness, officials have had women come in for their first prenatal care checkup when they were already in their third trimester.
Lovelady said health services in town are too disconnected and providers should coordinate care better so that pregnant women can more easily navigate the system.
The environment often doesn’t improve following the birth of the child.
The mother and her baby return to a home with little support, Lovelady said, which starts the cycle again. One of the reasons the Center for Health and Wellness was started was to address the issue of infant mortality.
“Fifteen years later, it’s still the hot topic issue,” Lovelady said. “This area is still known for a higher than average infant mortality rate.
“It’s almost one of those things that nobody talks about. Nobody talks about that kid that died.”
Non-Hispanic blacks have the second-highest rate of stillbirths in the state, according to 2012 data from the state. Stillbirths are counted separately from the infant death rates.
At eight months pregnant, Maelee Tolbert, 19, had a stillborn daughter. She named her Miracle.
“I found out I was pregnant three days before my high school graduation,” Tolbert said. “It was crazy because I had also just made the cheer squad at Emporia (State) University and then I found out I was pregnant. I still went to school, but I didn’t get to cheer.”
As a full-time bio-chemistry major, her stress level was high, she said.
Complications started when she was seven months along. She was dizzy and had high blood pressure, so she went to the emergency room in Emporia, where she was diagnosed with pre-eclampsia.
As the complications continued, she stayed at Via Christi St. Joseph Hospital for Thanksgiving. She lost Miracle the next day.
“She was just a pretty little girl,” Tolbert said. “I had a photo shoot with her because it kind of just looked like she was sleeping. She came out looking like me.”
A memorial was held Dec. 9, 2012.
The experience has been hard for Tolbert. Miracle changed her life.
“It made me want to do more,” she said. “I didn’t want to just be depressed. She’s kind of like my motivation.”
Tolbert plans to go back to college in January.
Last year, there were 195 reported stillbirths in Kansas, which is defined by the state as a birth of a fetus that weighs more than about three-fourths of a pound.
The stillbirth rate was highest for Hispanics at 8.7 per 1,000 births. Black non-Hispanics had the second highest rate at 6.7 per 1,000, followed by Native Americans at 5.1, Asians at 4.9 and white non-Hispanics at 3.9 per 1,000.
Search for answers
In 2010, the Sedgwick County Fetal and Infant Mortality Review board was created to collect data on infant deaths using hospital charts, prenatal records and coroner reports.
The group reviews information – after removing identifying data – and then presents it to a case review team that has doctors, social workers and clinic directors from around the area.
“They look at the cases and see what gaps or services we were missing or what could have helped that client in that pregnancy that might have had a better outcome and give us recommendations,” said Crystal Bacon, a registered nurse and member of the review board that works with the health department.
The recommendations are then taken to a community action team.
“They will be the movers and the shakers that will decide what changes need to be done in the community,” she said.
Sedgwick County also offers the Healthy Babies program, which has prenatal and parenting classes as well as home visits by nurses for families with children up to 2 years old. The program is free regardless of income.
Healthy Babies also receives federal grant money to help it identify families in certain ZIP codes – 67214, 67208 and 67219 – roughly between 21st Street and Pawnee, and Broadway to Woodlawn. These are neighborhoods that have been identified as having higher infant mortality rates.
Although many groups in the state are working to collect data on black infant deaths, it’s time they put plans into action, Lovelady said.
“At what point do we say, ‘Enough is enough, let’s do something about the data we’ve collected?’” she asked. “Your neighbors’ babies are dying more often than those in Third World countries.”
‘These kids need care’
Roundtree said she has thought of Avana every day for the last 20 years, wondering what she would look like and how she would act. Her daughter Avree is now 20 and is a mother, too.
She said it saddens her that infant deaths are still so common, particularly among young African-American mothers.
“These kids need to know that it’s OK to say they’re pregnant,” said Roundtree, who has heard of girls who bound their stomach with bandages to hide their pregnancy.
“They’re not going to the doctor when they should be, as soon as they should be because they’re so worried that Mom’s going to get mad and kick them out or Dad’s going to get mad or whoever they’re living with. Or so-and-so is going to look down on them.
“Let’s not do our kids that way. I really think it makes a difference because these kids need care as soon as possible.”
For families that lose a child, the grief is everlasting, Lovelady said.
“All the excitement and joy,” she said. “You bring the kid home and you have the room set up. You have this addition to your family and if you have other kids, they’re connected to this child and, ‘It’s my little brother,’ ‘It’s my little sister,’ and then all of a sudden that baby is not there anymore.
“That’s a hole in a soul. That’s a hole in the mom, the dad, the kids, the grandma. It’s a hole in the community.”