Post and Courier Investigation
Cradle of Shame
Why are so many South Carolina infants dying at third-world rates?
Babies in a broad swath of rural South Carolina come into this world with little better chance of survival than a child born in war-torn Syria.
They face a toxic mix of poverty, chronically sick mothers, premature birth and daunting barriers to health care.
The Palmetto State’s infant mortality rate hit an all-time low last year, but that achievement largely bypassed its rural corners, where infants, white and black, still die at third-world rates, a five-month Post and Courier investigation has found.
More than 200 newborns from these rural counties have died on average during each of the last three years, many from preventable problems.
These struggling communities remain largely untouched by a four-year state campaign to stop babies from dying unnecessary deaths.
The state provides relatively little money to support some of the most promising infant death prevention efforts. And the programs aren’t available in some counties that need the most help.
South Carolina has long ranked among the deadliest states for newborns. Since 2000, 6,696 South Carolina babies have died before their first birthday. That’s more than double the number of people killed in the 9/11 terror attacks.
In recent years, noticeable gains have been made in the state’s booming metropolitan areas, where state-of-the-art hospitals and programs exist to help new mothers through the risks of pregnancy and fragile first months after birth. But poor areas of South Carolina have been left behind, with neither the money nor the resources to conquer the problems claiming their young, the newspaper’s investigation found.
Consider the following:
The mothers of more than a quarter of the newborns who died last year received little or no prenatal care. The death rate for those babies is more than five times the statewide rate. For blacks it’s about seven times higher.
The state has seen its infant mortality fall significantly before, only to have it rise again. From 2002 to 2003, the rate dropped more than 10 percent. Then in 2004, it increased by more than 10 percent.
Among blacks in some rural counties, infants die at rates triple that of whites, mirroring infant death rates in such impoverished countries as Vietnam. Worldwide, infant mortality rates are considered a bellwether for a country’s overall health.
If were a country, how would its infant mortality rate rank? (Click the box for more options)
Saving money is one of the key motivators behind the state’s desire to improve infant health. That’s because Medicaid in South Carolina pays for more than half of all births every year. The issue is complex. When asked to calculate how much it spends each month on babies in neonatal intensive care, the state declined. Its explanation: the information was not “readily available.”
Eight of South Carolina’s 46 counties don’t have an obstetrician, a physician who specializes in care for women during pregnancy and childbirth. Two other counties have only one part-time specialist. This leaves patients with little or no ability to get vital health care needed during their pregnancies.
The system set up to train physicians in South Carolina and throughout the United States does little to encourage medical school graduates to practice in rural areas where the need for health care is most acute.
South Carolina is not alone in this disparity between either rural and urban or white and black rates of newborn deaths.
In its latest two annual reports, Child Health USA 2012 and 2013, the U.S. Department of Health and Human Services said infant mortality in rural counties, especially small ones, runs almost 10 percent higher than in urban areas.
For example, Georgia’s rural Lowndes County, on the Florida border, was identified in a 2012 public health report as the state’s worst for infant mortality, with a rate three times the national average of about six deaths for every 1,000 births.
For blacks nationwide, the rate of newborn death was more than double whites. And in South Carolina, black babies fared slightly better than the national average, the report showed.
Southern states generally scored higher rates of black infant mortality than the nation as a whole, but several Midwestern states, such as Wisconsin, Indiana, Illinois and Ohio, were equally high.
Accessibility of care is critical
The Medical University of South Carolina purposely set up its North Charleston Children’s Care clinic in a strip mall, on a public bus line near Northwoods Mall, so low-income families can more easily get to the doctor.
Henry Lemon, a pediatrician at the clinic, said lack of transportation is one of the biggest hurdles for the poor in obtaining routine medical care.
That hurdle is far higher in the state’s rural areas, where people not only lack public transportation but also doctors, especially specialists who focus on women’s health and childbirth.
Poor rural areas simply “aren’t attractive places for doctors to live,” Lemon said.
The vast majority of more than 500 OB/GYNs in South Carolina practice in the state’s three main metropolitan areas — Charleston, Columbia and Greenville — making it extremely difficult for many women to get specialized care during their pregnancies.
Low-income women are entitled to Medicaid during their pregnancies, but that may be of little benefit in many parts of the state with no specialists in women’s care and few family doctors, Lemon said.
“You can provide insurance, but you can’t provide medical care.”
A committee set up two years ago by the Legislature to study graduate medical education in South Carolina found “pockets of medically under-served populations” throughout the state.
“The state has struggled to attract and retain physicians to serve in these areas,” the committee’s report stated.
The committee recommended last year that South Carolina set aside 15 percent of the state and federal money used each year for graduate medical education, mainly hospital residencies, to train doctors to work in rural communities. That’s about $28 million.
So far, that has not happened.
For poor, rural South Carolinians the hurdles to proper medical care remain. Many can’t afford it; and if they could, it’s almost impossible to get to the doctor. Lemon sees part of that Catch-22 play out at his clinic.
“We are undergoing our second expansion of physical space, and the decision to stay in this commercial plaza was based on the fact that we have a bus stop in front of the building.”
If rural areas don’t have doctors or medical facilities and people have to travel long distances for appointments, the odds are they won’t go as often as they should or won’t go at all, Lemon said.
“If people have to travel, it can determine the amount of care they get.” It’s not unusual in some rural counties that the first time a poor, pregnant mother sees a doctor is when she shows up at the emergency room to deliver, Lemon said.
Being able to afford medical care and get to medical offices is critical in preventing infant mortality because a baby’s fate lies with the mother’s health before and during the pregnancy.
Without a healthy diet and regular health care during pregnancy, serious problems can develop and babies will die or survive with deformities, Lemon said. Babies can survive after 22 to 23 weeks of pregnancy, but complications can be dire, or fatal.
Race also is a major contributing factor in infant mortality. Blacks tend to be less healthy than whites, with markedly higher rates of obesity, diabetes and hypertension, all of which contribute to higher death rates among infants. In South Carolina, 43 percent of blacks are obese, compared to 28 percent of whites. Donna Johnson is head of MUSC’s Department of Obstetrics and Gynecology and a specialist in high-risk pregnancies. She agrees with Lemon that a key problem with reducing infant mortality is that “you really can’t escape the poverty” and the barriers that go with it.
She believes the most effective way to reduce infant mortality over the long run is a major and long-lasting public health education campaign.
“I truly believe in education. The more we can educate the public the more we can improve our health care … South Carolina gets an ‘F’ in women’s health care,” Johnson said.
“We wouldn’t have as big a problem out there if child-bearing was a man’s issue.”
The ‘cradle of death’
Sherena Weaver cups her hands under her premature baby, lowers her face and touches her lips to his. She caresses Stanley’s cheeks with the tip of one finger and whispers her love.
Stanley’s home since his Oct. 16 birth has been the sterile Neonatal Intensive Care Unit at McLeod Regional Medical Center in Florence. A see-through plastic incubator serves as his crib and keeps him warm.
Weaver visits her new son almost daily. That’s not an easy task for a mother who lives 36 miles away in Johnsonville, has three other children to care for and is studying to complete cosmetology training.
But Weaver knows her baby needs her, and not just for the love and attention that only a mother can provide. She also was the source of health-giving breast milk that she pumped and carried to the hospital until she went dry.
Stanley arrived in this world at 23 weeks, barely past the time that modern medicine can save a preemie’s life. He’s tripled his 1 pound, 4 ounce birth weight since then.
Dr. Joe Harlan, the neonatologist overseeing Stanley’s care, smiles as he watches the tiny baby and his cooing mother. Harlan looks up and his smile disappears. Stanley seems well on his way, Harlan said, but half of all infant deaths occur among babies like Stanley, born before 32 weeks.
McLeod Regional Hospital sits in the middle of South Carolina’s “cradle of death,” a cluster of eight counties with some of the state’s highest infant mortality rates over the past three years.
In these counties, babies die before their first birthday at up to double the state average.
A couple of other counties have higher infant death rates, including McCormick, with an average rate of 34 babies dying for every 1,000 births in the last three years. But those figures are skewed by the counties’ tiny number of births.
Reaching the neediest
McLeod’s green-roofed, 12-story hospital tower rises above Florence like the Emerald City of Oz. It is one of the best and most profitable hospitals in the state, but it serves a poor region where blacks account for about half of the population.
That’s why Hart Smith, McLeod’s vice president of Medical and Women and Children’s Services, said the hospital needs to reach out more to head off infant mortality. “We have to move more to taking care of people outside the hospital. … By the time you land here, it’s too late.”
Many pregnant women rarely see a doctor, except when they show up at the emergency room to give birth. Statewide birth certificate data for 2013 shows nearly 600 pregnant women in South Carolina, and 26 in Florence County alone, received no prenatal care before they gave birth.
That’s why McLeod recently began a program to send nurses to meet regularly with low-income, first-time mothers-to-be.
“We have an unhealthy population,” Harlan said. This means many mothers start off their pregnancies with health issues that can harm their babies. Five of the counties in the cradle of death rank among the least healthy in a state that is one of the nation’s sickest.
As Harlan sees it, the Pee Dee region’s poor health and high infant mortality are the results of a social problem. That’s why it’s so hard to deal with.
Making it easier for low-income expectant mothers to receive proper medical care is a big obstacle. The hurdle becomes nearly impossible to clear when you add the need to change a culture, Harlan said.
Many residents in the region show a reluctance to see doctors — a cultural problem rooted in rural poverty, a sense of separation from society as a whole and a suspicion, even mistrust, of authority figures.
Medical authorities agree it manifests itself in a combination of poor diets, chronic illnesses and abusive habits. It’s easy to see the complexity of the problem, Harlan said.
To make matters worse, these problems disproportionately affect the region’s large black population.
The numbers paint a clear and shocking picture: In many of the counties in the cradle of death, black babies die at rates two to three times that of whites in the rest of South Carolina.
Even in Florence County, home to McLeod and its modern medical facilities, black babies have died at the rate of more than 20 per 1,000 live births in the past three years — almost triple the rate for white babies in Florence and about four times the rate for white babies statewide.
For years, the state’s hospitals have attempted to curb infant deaths by trying to make sure that 90 percent of all babies born at less than 32 weeks in the womb are delivered at one of the state’s top-five rated hospitals with well-equipped and staffed neonatal units.
Those hospitals are McLeod, MUSC, Palmetto Richland Memorial, Greenville and Spartanburg Regional Medical Center.
The effort, however, misses three out of every 10 of those babies, Harlan said.
It’s not that the state hasn’t made significant progress.
The state’s infant mortality rate has plummeted by half since 1990, when 12 babies out of 1,000 died before their first birthdays.
Still, many of the efforts to save more babies have been limited in duration and reach, Harlan said. The state needs to develop a system with which “we can sustain some of these things,” Harlan said.
“Health care in South Carolina is quite good, if you can access it.”
Lucy lies on a hospital bed about to give birth prematurely. She breathes heavily, her heart races and she screams in pain as her baby slips between her legs into waiting hands.
Lucy is a sophisticated, lifelike dummy. She has been programmed to mimic many birth problems in a mobile lab that travels the state to train medical professionals in lifesaving procedures.
Lucy and her roaming lab were paid for with private donations to the Palmetto Health-University of South Carolina School of Medicine Simulation Center. Lucy is just one of many efforts underway in South Carolina to improve infant health.
Most of these programs stem from the Birth Outcomes Initiative, founded four years ago by the former director of the state’s Department of Health and Human Services. The initiative and some of the other efforts likely played some role in the state’s recently reduced rate of newborn deaths.
Some of the programs aren’t available in every South Carolina county, and the state has made minimal financial investment in the efforts. Most are paid for almost entirely by the federal government and grants from nonprofits.
Mother’s Milk Bank of South Carolina
Severely premature babies are more likely to die if they’re given infant formula instead of breast milk.
A human milk bank can fill this need when a mother can’t produce milk or can’t produce enough for her baby.
But South Carolina hasn’t had its own milk bank. Because of that, the Medical University of South Carolina has imported human breast milk from a milk bank in Austin, Texas.
This year, an MUSC doctor is launching the state’s first nonprofit milk bank to ensure that premature infants in neonatal intensive care units at the state’s major medical centers have access to a reliable supply of human breast milk at a lower cost. The bank has been built with about $200,000 in donations from several organizations, including the South Carolina Department of Health and Human Services and the BlueCross BlueShield of South Carolina Foundation.
Infants typically need to grow for 40 weeks in their mother’s womb before they are born, but doctors have routinely scheduled early inductions or C-sections for their convenience or at the patients’ request.
Research shows that inducing delivery before 39 weeks may be dangerous for infants, but it still happens.
That’s why, in 2013, the South Carolina Medicaid agency and BlueCross BlueShield of South Carolina stopped paying for deliveries before 39 weeks unless the physician could offer a valid medical reason for early delivery.
Between early 2011 and 2013, the percentage of elective inductions in South Carolina dropped by half, according to a report published last year.
Supporting vaginal birth
An increasing number of C-sections over the past 20 years have been performed for convenience or out of an abundance of caution by doctors who fear medical malpractice lawsuits.
The state Medicaid agency wants doctors to become more comfortable allowing mothers to labor longer before resorting to a C-section delivery. They are doing so because the agency pays for 56 percent of all deliveries in South Carolina every year.
C-sections are associated with higher health care costs. Eventually, Medicaid leaders have indicated they will change the way the agency pays hospitals for delivering babies in an effort to further reduce the C-section rate.
This program offers group prenatal support. Women who are expecting infants, including those insured by the low-income Medicaid program, may sign up for one of these groups that meet regularly before delivery.
Moms learn tips from health care professionals, form bonds with each other and share their experiences.
One study shows that women in group care, particularly black women, are less likely to deliver premature babies than women who don’t receive such care.
Centering Pregnancy is not yet available in every county.
Nurse Family Partnership
This national program has earned much recognition for improving infant health by pairing nurses with first-time, low-income moms who need help. Nurses meet their assigned mothers at home several times each month throughout pregnancy, and then after delivery until their babies turn 2 years old.
The program is expensive, but evidence shows it works, according to three randomized, controlled trials. Fewer babies born into Nurse Family Partnership families are premature or need treatment in a neonatal intensive care unit. The program currently is available in 26 of South Carolina’s 46 counties.
It’s financed by federal funds and private grants, with minimal state money.
These injections, sold under the brand name Makena, may be given to pregnant women who previously have given birth to premature infants. The shots are considered an effective way to prevent the mother’s next baby from being born too early.
The list price for the brand-name version of this drug is $690 for each weekly injection. A spokeswoman for the pharmaceutical company that sells the drug said commercially insured patients typically pay about $10 out of pocket per injection and Medicaid patients pay nothing. That doesn’t mean the drug is free for insurance companies or state Medicaid programs.
In South Carolina, the Medicaid agency spent more than $500,000 on brand-name and compounded versions of this drug during a six-month span in 2014. One of the primary goals of the Birth Outcomes Initiative has been to make the drug “available to all at-risk pregnant women with no ‘hassle factor.’”
In 2013, the South Carolina Department of Health and Human Services launched a campaign called “Race to the Date” to encourage birthing hospitals to become “Baby Friendly,” a national program that promotes breastfeeding.
Hospital nurses must undergo extensive training and cannot offer new moms the option of feeding their infants formula unless it is medically necessary.
Four hospitals, including Roper St. Francis Mt. Pleasant Hospital and Medical University Hospital, each earned $200,000 from the state government for successfully achieving the recognition by the fall 2013 deadline. Since then, three other South Carolina hospitals also have earned the “Baby Friendly” designation. The vast majority of facilities in this state that deliver babies have not been certified. Research shows breastfeeding lowers the risk for disease and promotes infant health. It also costs nothing for a mother to breastfeed her baby.
Healthy Connections Checkup
South Carolina did not expand Medicaid eligibility under the Affordable Care Act. But, last year, the agency did revamp an existing family-planning program that now provides a primary care checkup and preventive screenings once every two years for low-income adults. This program does not pay for any follow-up care. Critics argue this program, called Healthy Connections Checkup, is inadequate and the full Medicaid expansion would provide more comprehensive benefits for about 350,000 low-income South Carolinians.
Nevertheless, the program could be valuable for women in their child-bearing years. Many such women qualify for full Medicaid coverage only when they become pregnant. Experts say medical care before pregnancy and between pregnancies is vital for women who want to deliver healthy children. It costs the state about $300 per person to administer Healthy Connections Checkup each year, compared to about $3,000 per person enrolled in regular Medicaid. Most of this cost is covered by the federal government.
Short for “Screening, Brief Intervention and Referral to Treatment,” the SBIRT test was conceived by the state Medicaid agency in 2011. It’s designed so doctors can identify pregnant women who need help with a variety of issues, including alcoholism, substance abuse and domestic violence.
The state pays providers a small fee for each SBIRT test they administer, but the industry has been slow to catch on. Recent data provided by the state shows that Medicaid paid for 31,038 deliveries in 2013, but only 7,953 SBIRT screenings.
That means many pregnant women who need help with these issues, which may be harming their unborn babies, have not been referred to treatment. That’s because doctors and nurses across South Carolina haven’t consistently asked the women about their personal problems.
The state Legislature has invested millions of dollars, and is expected to invest millions more this year, to build up South Carolina’s telemedicine network, which connects medical specialists with doctors in rural and underserved areas.
Improving access to specialized prenatal care is one of the many services the telemedicine system provides with computerized, videoconferencing equipment. It is not perfect. Telemedicine is only available in select counties and some providers say they’re still confused about how they will be paid for delivering this care remotely.