Dr. Sandra Lane and Kathleen Coughlin offered insights into a little-known local issue: the unequal health and survival of babies caused by poverty and structural discrimination.
Sandra Lane is Chair of the Department of Health and Wellness, Professor of Social Work and Anthropology, and CNY Master’s of Public Health at Syracuse University, as well as Research Professor in the Department of Obstetrics and Gynecology at SUNY Upstate Medical University. She was the founding director of Syracuse Healthy Start, an infant mortality prevention project with the Onondaga County Health Department.
She is the author of Why Are Our Babies Dying? Pregnancy, Birth, and Death in America, which chronicles, in clear and simple prose, a decade of work on the unequal health and survival of babies caused by poverty and structural discrimination. When asked what inspired her to this field of work, Sandra explained that her first child was stillborn due to an infection introduced into her amniotic sac through amniocentesis. When she came to this area because of her husband’s job, the Syracuse Health Department needed someone to help write grants for infant mortality, and she chose to help others as well as honor her infant son. She couldn’t choose what happened to her, but she could choose how to respond.
Kathleen Coughlin has been Project Director of Syracuse Healthy Start since 2006. Her professional interests include studying breastfeeding rates and duration, racial inequalities in maternal and child health, and access to early prenatal care. Kathleen explained that she got into her career because when she was in her twenties, her best friend had a premature delivery and the baby died. Kathleen was also pregnant at the time, and her friend’s baby’s death still motivates her to help women become educated and avoid the same gut-wrenching outcome.
Sandra opened by explaining part of her job history. From 1988 to 1992 she was the Reproductive Program Officer in the Ford Foundation’s Cairo, Egypt, field office with responsibility for Egypt, Sudan, Jordan, Yemen, Lebanon, and the West Bank and Gaza. Then, in Arabic, Sandra greeted the Muslims in our audience, to the delight of all.
Sandra shared the fact that has inspired her research over the past dozen years: in the 1980s, Syracuse had the highest African-American infant mortality in the country—30.8 deaths per thousand births, comparable to that in many developing countries. This statistic refers to deaths from all causes between birth and the first birthday. Sandra went on to explain that this statistic indicates that our society lacks development; it is an indicator not of lack of wealth, but of an inequitable distribution of wealth. This is an example of structural violence: preventable harm or damage to persons that does not result from someone committing an act of violence, but rather that emerges from an unequal distribution of power and resources and is thus built into the structure of the society.
Sandra was interested in whether the infant mortality statistics were predictive of higher mortality in Syracuse African-American adults. To find out, she looked at death certificates filed in Syracuse vital records in 2000. She collected information on both men and women identified as either African American or Caucasian. (There were not enough identified as Asian, or Native American, or Latino to be statistically significant). She found that fully half of African-American males who died in that year were under the age of 65, while only 25% of European-American males were under 65. In every age group up to 85 years, there was a higher percentage of deaths for African Americans than for whites. Sandra calculated that if African Americans had the same death rates as European Americans for the year 2000, there would have been 75 fewer deaths among African-American males and 51 fewer deaths among African-American females.
Analysis of death certificates revealed that a high number of these excess deaths could be attributed to chronic diseases such as diabetes, stroke, heart disease, and kidney failure. And among African Americans, these diseases are frequently not diagnosed until the individual already has organ failure or severe circulatory problems that lead to amputation. Many African Americans and Latinos delay visiting doctors because they do not have health insurance. Excellus has estimated that 17% of employed adults in Onondaga County were uninsured between 1996 and 2003. And the Fair Wage Coalition has estimated that 50% of Syracuse employers don’t give health benefits.
Sandra looked at the percentage of pregnant employed women in the Syracuse area who did not have insurance during their pregnancies. Among women age 20 and older who were employed, about 27% of white women and 50% of African-American women and Latinas needed to receive Medicaid because they were uninsured.
Sandra and Kathleen work closely together, so Sandra passed the discussion to Kathleen. Kathleen explained that the medical establishment holds unsubstantiated opinions of uninsured patients. Many providers consider that those who come to medical care late are drug users. However, pregnant women who need public assistance sometimes delay getting services because of the stigma associated with doing so. They also find it difficult to get the paperwork together and are intimidated by the process and accusatory questions that they face. Syracuse Healthy Start has worked to sensitize health care enrollers, so that they will welcome pregnant women and help them feel more comfortable with the experience of seeking help. Another problem discovered by a researcher who surveyed medical providers in public clinics in Syracuse was that there were no female obstetricians, a definite obstacle for observant Muslim women and many recent immigrants. (There is now one female obstetrician, with plans for more.)
Kathleen explained that although infant mortality rates have decreased, a disparity still exists: 17 babies per thousand born to African-American mothers, compared to about 6 per thousand born to European-American mothers, die each year. Several community-based organizations have stopped services for pregnant women because of funding cuts. Healthy Start’s funding has been flat for eight years, but they are making an effort to maintain current staffing levels.
Sandy wanted to give us some good news and to tell us what programs of Syracuse Healthy Start do work. First, according to statistics from 2000 to 2002, providing case management for teens resulted in lower mortality rates for their babies than the rates for mothers in their twenties. This was despite teens having a higher rate of sexually transmitted diseases (STDs), in part due to their having older partners. Second, focusing on health literacy, with materials written at appropriate reading levels, has been effective. The city graduation rate of ninth grade students is 28.2%, according to the Urban Institute, which calculated the proportion of 9th graders who receive a diploma when they reach the end of 12th grade. This is the lowest in the state, so health education outside of the schools is essential. Third, Healthy Start gets pregnant women who are incarcerated at the Justice Center or Jamesville into care. There are between 100 and 140 of these women each year, and those who complete the care program and who remain local, where they can be followed, have outcomes similar to those of women who have not been jailed. Fourth, for pregnant women, bacterial vaginosis is a serious infection, and when it is treated, the racial disparity of early premature birth in the first 32 weeks of pregnancy disappears.
What has not worked for pregnant women is welfare reform. The requirement to work until the 36th week of pregnancy is punitive and may result in more time in the neonatal intensive care unit (NICU). Of the infants of Temporary Assistance for Needy Families (TANF) clients, 15.7% required care in the NICU, compared with 6.5% of infants of women covered by Medicaid who did not receive public assistance. Kathleen explained that her son was born at 34 weeks, so he was in the NICU. She was the only mom who was not very young, and she had to think how expensive (NICU costs $1500 to $3000 per day) these births to uninsured teen mothers are to society.
Yet another risk factor was a woman’s elevated blood level of lead when she was a very young child. When girls with high lead levels as children reached ages 15 to 19 years, they were over 50% more likely to be on their second or higher pregnancy. And the percentage of children with elevated blood level of lead is highest in those areas with the poorest birth outcomes.
Currently in Syracuse there have been many deaths by smothering caused by co-sleeping. This is a problem because of our modern soft mattresses and fluffy comforters; it is not relevant when families slept on a thin mat with a single blanket. Researchers were surprised when they realized that some local medical providers thought smothering was not a middle-class problem and hospital release procedures did not warn of the problem. After an information campaign aimed at doctors and nurses, Kathleen was pleased that following the birth of her most recent child, she received the same warnings not to put the baby in bed between the parents that the teen parents received.
In the past, babies of lower socio-economic mothers at public clinics had their urine tested for drugs. However, recently Dr. Aubry began notifying all mothers attending prenatal services that he wanted to do urine tests at the first pre-natal visit, with the understanding that no authorities would be notified of the results and that drug users would be offered care. Sandra and Dr. Aubry found that there were no differences in drug use among racial groups. One significant difference was that white women were smoking cigarettes more than black women.
Kathleen mentioned a study done in focus groups to find out what women’s perceptions were about smoking. Lower socio-economic groups, when asked what percentage of women smoke while pregnant, responded 70 to 80 percent. When upper socio-economic groups were asked the same question, they responded “none.” Kathleen said that perception can create its own reality, and if everyone seems to be doing something, it becomes acceptable.
Sandra’s statistical analysis has shown that intrauterine growth restriction (IUGR), which results in low-birth-weight babies, is directly related to absence of a local supermarket (defined as a grocery market selling a variety of types of food, including fresh produce and low-fat dairy). It makes sense that lack of sources of healthy food for the mother would affect her pregnancy. Sandra projected a slide which showed the Syracuse areas with the highest risk for poor birth outcomes, and another slide which showed areas within one-half mile of a supermarket. Proximity to a supermarket directly correlated with better birth outcomes, regardless of income levels. Ironically, those high-mortality areas had three supermarkets prior to 1975.
Corner stores are available in high risk areas, but they provide little or no fresh produce or low-fat dairy, and what they have is likely to be out of date or twice as expensive as supermarkets. They make their profits from lottery tickets, cigarettes (including “loosies” or single cigarettes sold for fifty cents each), and alcohol. In fact, 68% of all lottery tickets sold in New York State are sold at corner stores, and $40 million worth are sold annually in Syracuse. Persons with incomes below $23,000 average $595 in lottery purchases, while those with incomes above $33,000 average $49 in lottery purchases. Again, the Syracuse zip codes with the lowest per-capita income have the highest lottery sales, as people are buying hope. Lottery ads show a high percentage of people of color, and they tout lottery tickets as “a good investment choice.” Since lottery money is supposed to support schools, and the money is distributed according to attendance numbers (how many students attend, not how many are eligible to attend), and Syracuse schools have an abysmal drop-out rate, a disproportionate amount of lottery money collected in Syracuse goes to high-attendance schools such as East Syracuse–Minoa and Fayetteville-Manlius.
Sandra said that IUGR statistics can be considered a stand-in for diabetes in older individuals. If adults do not have access to healthy food, higher obesity and then diabetes can be the result. She called this another example of structural violence: No one has consciously created this problem. It is invisible, unlike spectacular accidents such as when a child falls down a mine shaft and the entire town rallies to the rescue. She related the irony of the location of a kidney dialysis center downtown. Kidney failure is often the result of diabetes or high blood pressure, both related to poor diet. The dialysis center is sited on land that in the past had a supermarket, and its loss has contributed to inner-city poor diets.
Sandra told us that USDA licensing of markets, including corner stores, requires that 52% of sales should be food, but this is not enforced. Also, state law restricts how much can be charged for milk, and corner stores exceed this. However, researchers do not want to turn in violators of either of these laws, as that could inhibit cooperation that is needed for future research.
When asked about the possibility of providing public transportation to more distant grocery stores, Sandra said that it has been tried and that Centro is responsive, a good corporate citizen. However, it is difficult to ask people to shop all at the same time, with children, and it is difficult for them to carry groceries on a bus. The Southwest Community Center holds a weekly farmers market in the summer. WIC (Women, Infants, and Children) provides Federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk. Locally, WIC is doing several farmers markets downtown, with special checks that can be used only to buy fresh fruits and vegetables.
Another factor affecting African-American infant mortality in the Syracuse area is the disproportionate incarceration of African-American males, many times that of the white rate of incarceration. In Onondaga County, African Americans comprise 9.4 percent of residents and 52 percent of the inmates in the local correctional facility. White residents are more likely to receive probation or a fine. In situations where the father did not sign the Declaration of Paternity within 48 hours after the birth, babies were almost four times more likely to die between one month old and their first birthday. Babies need two parents.
WTB member Liz Spence related her experience with Ireland. Irish law requires that new mothers be given a six-month leave with pay and, if requested, an additional six months without pay. In addition, the government provides every new mother with a “mother mentor” to give advice and help for up to a year.
WTB member Bonnie Shoultz asked if Sandra had looked to see if toxic mold is a problem here. Sandra said the researchers looked at that during an asthma study. Instead of mold being a problem, they found that 87% of the babies’ urine samples showed high smoke levels, even though only 50% of the mothers smoked.
WTB co-founder Betsy Wiggins asked what can we do to support Sandra’s and Kathleen’s work. Sandra suggested we work to get USDA rules on food sales at corner stores enforced. Also, Rockefeller Laws need to be revised to lower the rate of African-American incarceration because the disproportionate incarceration of African-American males results in babies with uninvolved fathers. Also, 92% of arrests for loitering were young African-American males, arrests for just “hanging out.” Sandra said that Congressman Dan Maffei is very open to new avenues to address Syracuse problems.
Sandra said that she and her colleagues are conducting an epicenter zip code analysis. There are about 30 zip codes in New York State to which high numbers of incarcerated individuals return after release, and those zip codes have higher HIV rates among African-American women. Two of these zip codes are in Syracuse.
Kathleen added that the smothering while sleeping issue is the number-one cause of preventable death in Syracuse. Parents may put an infant in bed with them because of the high cost of heating, or simply the cost of a crib and warm infant clothes. So Healthy Start tries to provide cribs and wearable blanket sleepers (not comforters) to moms who can’t find a crib from any family or friends, and she always looks for donations. This was met by a flurry of women offering cribs from their own homes.
In closing, Daryl Files told our speakers that we can choose to be part of the solution to the problem of inadequate diet. She offered each woman a packet of vegetable seeds to plant and suggested they consider donating the produce to a local food pantry; a two-page list of local food pantries was handed out along with the seed packets. Daryl then read a poem by Destiny Paige Bailey, “My Mother’s Garden,” that declares that we are our mothers’ gardens, grown and nurtured with love and care.