Why do more babies die in Illinois?

At the stroke of midnight on December 31, 1987, 16-year-old, unwed Crystal Wilson gave birth to Chicago's New Year's Baby. Because of her special status, a few days later the 6-pound, 11 1/2-ounce girl was driven home from the hospital in a silver Rolls Royce to Crystal's mother's apartment. There mother and baby will live without the baby's father who is, like Crystal Wilson, a high school sophomore. The birth was similar to that of thousands of babies born every year in Chicago's impoverished west side, with the exception that most of them don't go home in limos.

The New Year's Baby's situation could have been worse, however. She was born healthy, so her teen mother was thinking about pink blankets and Pampers instead of talks with the intensive care doctor or worse, the mortician, because in Crystal Wilson's neighborhood, 20 out of every thousand babies born alive die. They die because they weigh less than five pounds and their tiny organs are still unformed, or they die of parental neglect and ignorance during their first year of life.

The New Year's Baby's chance for survival might have been enhanced because officials say her mother had been contacted through her high school by the state-funded Austin Infant Mortality Network, sent to a prenatal clinic, given healthy food and provided with sources of funds for medical care long before she went into labor. Since she was covered by Medicaid, her doctor was paid about $450 for delivering the baby — a price some physicians claim doesn't even cover the cost of malpractice insurance for obstetrical procedures. But Crystal's delivery was in stark contrast to a situation public health experts say is common in the city and poor areas of the state: Medically indigent women arrive in hospital parking lots, wait until they are well into labor and then go into the emergency room, thus forcing doctors to see them for the first time during their pregnancies. In many cases, the younger women deny they are pregnant to the last minute, and diet to hide the fact, thus further starving their progeny.

Infant mortality is predominantly a problem among southern states; Illinois' high rate is unusual compared to other large, northern states. When Gov. James R. Thompson first became interested in the problem at the National Governors Association, he went to work on a committee that consisted of mostly southern governors. Illinois' infant mortality rate belies the state's attempts to achieve high-tech status. Thompson seems to have faced the fact of the problem: His interest in the problem has landed him an appointment to the 15-member National Commission to Prevent Infant Mortality organized by House Speaker James Wright and Senate Majority Leader Robert Byrd.

Illinois' infant mortality problem is both urban and rural, and it is acute in hot spots from Chicago to Cairo. Downstate, the main problem is a shortage of obstetricians and quality care. In Chicago, infant mortality is highest in poor, black neighborhoods, sadly often right outside the doors of very sophisticated hospitals. One of the big mysteries health officials have tried to solve is why poor, urban blacks don't make use of such facilities. Twice as many black babies as white babies die in Illinois. This fact has led to a disagreement over whether blacks are genetically more susceptible to such problems as low birth-weight babies, or whether environment — poverty — is the culprit. The state of Illinois appears to have adopted the second theory.

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In 1986 the Infant Mortality Reduction Initiative (IMRI) was launched by the state legislature and the Thompson administration. Its purpose was to solve the problem with a many-pronged, grass-roots network system that would place control within the communities and bring already available social services together. The dual goals are lofty and politically risky: community control and social services rather than institutional or governmental control and medical services. The networks are supposed to tie together existing assistance for mothers and babies, find the mothers and babies and connect them with the services. The services can be anything from emergency housing through the federal Department of Health and Human Services, to healthier food, to psychological counseling to education.

State officials were at wit's end in 1985, having thrown money at various services only to find them underutilized, and the infant mortality rate on the rise again — up from 11 to 12 deaths per thousand live births — after several decades of decline. IMRI was the result. "We looked at where the resources were, and found these high risk communities often had the most resources," said Dr. Bernard J. Turnock, director of the Illinois Department of Public Health. "The people who needed them most were not using them. We decided, we have got to stop tinkering with the services and find out why people aren't using them.'' Thus was born the concept of giving money to communities and letting them allocate it as they saw need.

"People who come into the communities don't have the same kind of credibility as do the people inside it," said Turnock. "Without activity at the community level, services become hit or miss. We wanted to give them flexibility. We are saying, show us what you need. I think it is one of the few times communities have been dealt with like that. They are not being told what they need."

The IMRI organizers divided the state into seven high risk regions, with seven public health agencies as "lead agencies" overseeing 19 Chicago communities and 12 Illinois counties. The high risk areas were selected on the basis of infant deaths, plus income level, numbers of mothers on aid, fertility rate and teen pregnancy rate. Outside Chicago, the networks are in the Kankakee, Danville, East St. Louis and Decatur areas, and in the so-called "southern seven" counties. After identifying the areas, the state took a hands-off position and let the community networks emerge from the communities themselves, often through coalitions of not-for-profit groups which had never written grant proposals before. The process of organizing the networks was, officials will admit, chaotic, and no one is sure yet how administratively evolved they are even at the end of the first full year of operation. Some have been praised, others cited for, as one health administrator put it, "incredible naivete."

No one knows better how politically problematic the plan is than Illinois public health director Turnock. "A lot of the services [in IMRI] are being provided by nontraditional health services, but we feel that is integral to the outcome," Turnock said. "We all expect to be assailed by the General Assembly when they ask how we can justify spending 10 million when it's not for doctors and nurses."

A number of health professionals and public interest organization leaders are currently questioning the efficiency of the networks. One private coalition director said the IMRI networks are not working together with such critical programs as Medicaid and the federal food subsidy program for women and children, the Women, Infants and Children program. Another health professional said the whole program lacks administrative control. Nonetheless, officials are sticking by it. "There was an awful lot of chaos," Turnock said, "but there is an awful lot of trust built in also."

Austin Infant Mortality Network (AIM'N) director Gertrude Washington's offices look rehabbed on the inside, but from her window she sees the desolate, bedraggled 4900 block of West Madison Street. Washington's network serves the most densely populated high risk area of all the state's networks: Chicago's Austin neighborhood on the city 's western edge. Washington has a master's degree in human development and was a teen, unwed mother herself 17 years ago, when she gave birth to a dangerously underdeveloped daughter a month prematurely. That daughter is now a thriving teen attending a prep school in New York. Washington remains in the neighborhood her organization serves.

"We have been fighting to make the state understand that the baby's health is not the whole problem," Washington said. "The problem comes from housing, employment." Washington believes that blacks in particular have a built-in disadvantage when it comes to health care because of their poverty, and that in turn produces unhealthy mothers who produce sick or dying babies. "It is ironic that on the day Harold Washington died, I was giving a speech to a church group here on ongoing black health care," she said. "We blacks have not been taught preventative health care. We deal with the crisis only. But health is a matter of diet, where you live, whether you go for physicals, how you pay attention to your body."

Washington said her network, which is contracted to serve 1,500 pregnant women and 2,500 adolescents, is concerned chiefly with education. The group has produced and disseminated to area schools (including that of the New Year's Baby's mother) a videotape aimed at curbing teen sex. In the videotape, black teenagers in high school talk to each other about the pros and cons of early sex and pregnancy, and they conclude that getting pregnant isn't such a great idea.

Babies born to teen mothers are often premature or weigh dangerously less than five pounds (considered "low birth weight") or are ill-cared for in their first year of life. But teen mothers are only a small part of the infant death problem in the Austin area. Washington said infant mortality is worse among adult mothers because with adult poverty comes an insidious lassitude that leads to poor health habits and worse, alcohol and drug abuse. "We have found that the highest rate of infant mortality is among mothers on their second or third child, [mothers] who are between the ages of of 22 and 30," Washington said. "Their problems are not just medical. They are experiencing chronic depression."

The logical question is why already impoverished mothers continue to have children at an age when they are aware of options such as birth control, abortion or adoption. Washington said the power of reproduction is key to self-esteem in the poor,

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black communities, and that abortion and adoption are "taboo." "They get to where they don't care about themselves," she said. "The only thing they have to hold onto is that sexual power. Unless you can give them rewards outside of that part of their lives, it is almost impossible to show them a better way."

Trying to show them a better way are the 20 organizations that make up the Austin network: Community organizations such as the Austin Developmental Center constitute the bulk of the number, followed by private and public hospitals, ecumenical groups and government agencies including the Department of Human Services and the Chicago Board of Education. Six caseworkers roam the neighborhood and schools, looking for high risk women and keeping track of them once found. AIM'N is also the only network in Chicago that has hired three public health nurses to supplement work done by what critics charge is the Chicago Health Department's pitifully meager force of 63 nurses.

AIM'N focuses on social services and education — "habilitation," Washington says, "not rehabilitation because there was nothing there to start with in terms of good habits."

Not only has Decatur been losing jobs, it's been losing obstetricians who will take Medicaid patients, and thus, babies' lives, according to Joanne Luckenbill, executive director of the Macon County Health Department's high risk infant registry, which locally administers the state's IMRI program. With no jobs and no money, more and more women find themselves on Medicaid, creating a vicious cycle that led to a rising infant mortality rate in this downstate county several years before the problem cropped up statewide.

The highly industrialized county of 130,000 is more than half urban, and it has experienced the state's highest unemployment rate during the last 10 years. Luckenbill said that environmental problems, including use of polluted surface water, have been suspected — but not proven conclusively — of having adverse effects on mother and baby health in the area.

Before the high risk infant registry was initiated in 1983, Macon County's infant mortality rate (infant deaths per thousand live births) was 18.6, almost as high as that of the inner city Austin neighborhood. By the time the state stepped in with IMRI, the local health department had lowered that number to 13.2, still above the national and state number.

Although the county has one-third of the minority population in the entire east central Illinois region, the problem isn't primarily a black problem here. According to Luckenbill, 60 percent of the women with whom the registry deals are white. She said the number of births to teen mothers in the county is significant — 16 percent and rising.

"One thing we've experienced is obstetricians not taking public aid cards," Luckenbill said, "but access to care has always been a problem for the poor here." For some families, according to Luckenbill, there's a lack of motivation to get services even when available.

As in Chicago's black neighborhoods, low self-esteem among poor people leading to substandard prenatal care and ill or dying babies is a problem in Macon County. Consequently one of the Macon County network's biggest projects is a pilot program in the elementary and junior high schools. These programs, which Luckenbill terms "alternative education classes," emphasize "self esteem" in terms of health and sex. "If we can lift the self-esteem of the youth, we can prevent pregnancies," she said. So far only seven children out of a pool of more than 1,000 in the pilot program have been pulled out by their parents because of ideological/religious objections, according to Luckenbill. This spring the school board will consider whether to expand the program county wide. The Macon County network also has three case managers handling 1,200 pregnant women and infants. The women are provided with services through 52 agencies in the area. The services include pre- and post-natal care, infant day care, LaMaze classes, nutrition education through the University of Illinois Cooperative Extension Service, and nutrition through the Women, Infants and Children (WIC) food subsidy funded by the state and federal governments.

The southern tip of the state — Hardin, Pulaski, Alexander, Johnson, Massac, Pope and Union counties — is hardscrabble country. With a disproportionately high unemployment rate, a high percentage of minorities and a predominantly rural population, the region resembles Mississippi more than the rest of Illinois. The area is not very popular with doctors as a place to settle down; doctors who come stay only a few years and many of them don't accept the public aid patients who make up a large segment of the population, according to Phyllis Brown, director of the Southern Seven network.

The problem here is predominantly black. The nonwhite infant mortality rate for the seven county area is 39.8 deaths per thousand live births. Among whites in the region, the number is only 9.5 deaths per thousand. The counties individually have had the state's worst infant mortality rates at different times during the past decade.

The vast distances between urban or semi-urban areas, which have adequate health care, and the rural population is a major problem. The main effort of the Southern Seven network has been on transportation services. "We are trying to get people in to the doctor in the first trimester," said Brown. "Some don't go until the ninth month," she said, because they may have to travel more than an hour to the nearest hospital or clinic that will see them. The network has cars and vans that will pick up pregnant women and take them to their prenatal checkups, as well as pick up mother and baby for trips to the pediatrician. Brown believes the network has made a difference in prenatal care because of its transportation service.

Other services provided through network offices in each county are the WIC program, family planning and immunization. The network also recruited a family practice doctor into the region.

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But everything is not improving: One 17-year-old in the program had a baby in February 1987 and gave birth to twins the following November. The girl is impoverished, not married and now has three children. Brown said the girl lives in such a remote area that the network's attempts at education would never have reached her in time.

Vast differences exist between regions of the state and the problems they address. There are some common denominators, chiefly excessive babymaking among the poor; low birthweight babies and available care for them; and low and slow Medicaid reimbursement coupled with excessive restrictions on Medicaid eligibility for poor women.

Even with the attempts at outreach represented by the IMRI, there are many who say the state is not doing enough. Turnock admits that: "There have been positive steps. But none of us believes that this is all that needs to be done."

Activist groups and health care professionals see the state either not putting enough money into the problem or putting it in the wrong places and not monitoring the efficient use of that money. For example, Laura Adamski, director of a 40-group coalition called the Healthy Mothers and Babies Coalition, insists that increased Medicaid eligibility is the first step toward lowering the mortality rate. She and others urged the Illinois legislature in 1987 to pass a bill to implement in Illinois a federally authorized increase in Medicaid eligibility. The congressional authorization contained in SOBRA (Sixth Omnibus Budget Reconciliation Act) expands Medicaid to more households by allowing those with incomes up to 185 percent of the federal poverty level to be covered. About half the states have implemented the change, but the legislation enacted in Illinois requires only that the Illinois Department of Public Aid look into the possibility of increasing the eligibility.

Adamski and others in the mother/child advocacy business say that expanded state Medicaid coverage for pregnant poor women will result in a $3 for $1 saving: that for every dollar spent, the state would save $3 in infant intensive care. The numbers are not disputed at the Department of Public Aid. The point, say department policymakers, is that the department does not have the money for the program, and the legislature is not likely to fork it over. Mark Camille, chief of the department's bureau of medical practitioner services, said the department has no problems with the concept of expanding the Medicaid coverage "but there are no provisions for additonal money."

Some states have gone further than the federally sanctioned expansion for Medicaid eligibility; they presume the eligibility of all Medicaid applicants, giving them cards that qualify them for medical services while bureaucrats study their cases and decide whether they are eligible. The problem is obvious with such a presumption: potential expenditures on vast numbers of ineligible people.

Even with changes in Medicaid eligibility, there are other problems with Medicaid for pregnant women. Obstetricians are paid $450 per delivery by Medicaid but only for the delivery of the baby. If an obstetrician identified a high risk mother in her sixth month after treating her from her third month, he would get nothing from Medicaid for his prior services if he referred her to a hospital for more sophisticated treatment. Some obstetricians see Medicaid mothers as a higher malpractice risk because of the greater likelihood of poor health among the poor.

Dr. Arthur Kohrman is director of LaRabida Children's Hospital and Research Center on Chicago's south side. He says his hospital, which serves many children whose long-term problems are directly related to poor prenatal care, is the most Medicaid-dependant hospital in the state. He admits that doctors have stopped taking Medicaid patients. "I think physicians are more and more reluctant to serve the poor. Some doctors have stopped taking Medicaid patients. . . . but I think the problem [with Medicaid] is overstated."

He and others blame a social problem, unaffected by current programs, as a cause of infant deaths. "The issue is why are 14-year-old kids getting pregnant," said Kohrman. His response is similar to Gertrude Washington's assessment of the problem in the Austin neighborhood. "One plausible reason is that [having babies] is the only way they can assert their individuality. With no jobs, no future, it can be a concrete reward."

The national commission on which Gov. Thompson sits has been exploring social and cultural rehabilitation as an answer to solving the high rate of infant mortality, according to Thompson spokesman David Fields. If social and cultural conditions are promoting teen pregnancies and poor health care, government solutions may be difficult to deliver. While the focus of the IMRI program in Illinois looks in the right direction to the communities themselves — the state legislature usually becomes squeamish if asked to confront what may be the basic problem of infant mortality and teen pregnancy: sex and sexual practices. As one health expert who asked to remain anonymous said: "A lot of what goes on in the guise of infant mortality is the unwillingness of the city [of Chicago] and the legislature to deal with the contraceptive issue. It has a lot to do with the fact that Chicago is the largest archdiocese in the nation."

Political hay has been made time and again in Illinois over state support for birth control: Thompson appears to have remained steadfast in his support for programs that would reduce the numbers of high risk pregnancies. He initiated the Parents Too Soon program in 1983 to curb teen pregnancies, and the program has become a model for the nation. The program, among other mostly educational endeavors, does give money to such controversial projects as the DuSable High School Health Clinic, which dispenses contraceptives to high school students with parental consent, as do two other high school clinics in the state.

The state legislature and the Chicago City Council have been wary about any overt moves toward stemming the tide of births to high risk mothers. Nor is the IMRI set up to dispense contraceptives, although most of the networks are working on the problem of teen pregnancy through education. While the state holds back — for money reasons — any expansion of eligibility for Medicaid services to cover more poor women who are pregnant, IMRI continues. With its subtle but consistent emphasis on education, it appears to be an understated step in the direction of reducing prolific births among high risk mothers and reducing the delivery of unhealthy or dead progeny.□

Nina Burleigh is a free-lance writer in Chicago, covering political, legal and women's issues.

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