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5 Prenatal Care Having Healthy Babies One of the best measures of a nation's health is its infant mortality rate the number of babies born alive who die before their first birthday. Because the future of a country depends on the well-being of its children, the health of those children is a major concern. In highly developed countries the majority of children are healthy. Like much of the industrialized world, during this century the United States made a great deal of progress in reducing the number of deaths among newborns and infants. During the 1980s, however, that progress stagnated; In some U.S. cities infant mortality actually increased. Although the United States was never a world leader in reducing the mortality rate of its newborns, in 1918 it ranked sixth among 20 selected countries. It wasn't until the 1980s that the United States actually began to lose ground. In 1987, the most recent year for which there are data, the United States ranked nineteenth among industrialized countries in infant mortality, behind such nations as Spain, Singapore, and Hong Kong, where infant mortality rates were 9 per 1,000 births. The lowest newborn death rates are 6 per 1,000 births, found in Japan, Finland, and Sweden. In 1987 more than 10 out of every 1,000 newborns in this nation died. The death rate for white infants was 8.6 per 1,000 births. The mortality rate for black babies in 1987, however, was close to a staggering 18 per 1,000 newborns, more than twice as high as the rate for white babies. The mortality rate for black newborns in the United States matches the 96

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PRENATAL CARE 97 entire national infant mortality rates in Poland, Hungary, Portugal, and Costa Rica, which have the highest infant death rates among 32 nations studied by UNICEF. The high death rate among newborns in this country is related strongly to the number of infants whose weight at birth is lower than normal for their gestational age or who were born prematurely. Low birthweight is defined as under 2,500 grams (5 lbs. ~ oz.~; very low birth- weight is under 1,500 grams (3 lbs. 5 oz.~. Low birthweight is the result of inadequate fetal growth, and the lower the birthweight, the greater the immaturity and risk of death. A number of factors contribute to low birthweight: low socioeconomic status, a low level of education, child- bearing very late or very early in the reproductive years, poor nutrition, medical problems, and substance abuse. By providing necessary medical care and helping pregnant women improve their general health, prenatal care programs play an important role in alleviating risk factors and improving pregnancy out- comes, particularly if the care is adequate and obtained early. In its 1988 study of the health of infants and children, the Office of Technology Assessment (OTA) found that early and comprehensive prenatal care can improve the chances of overcoming low birthweight and infant mortality. Women who do not receive adequate maternity care, on the other hand, double the risk of having a low birthweight baby. Because low birthweight has such a dominant effect on newborn mortality and on health problems in infants and children, it has become the focus of many professional and public groups. When the National Commission to Prevent Infant Mortality was formed in 1987 to develop a national strategy for reducing infant mortality, its first major report succinctly summarized the current state of infant health in this country: What we found is that too many infants are born too small, too many are born too soon, and too many mothers never get decent care and guidance during their pregnancy. No single reason can explain why the U.S. infant mortality rate stopped declining in the 1980s. Infant mortality is rooted in a broad, saddening array of factors such as poverty, absent fathers, physical and emotional abuse, poor housing, lack of parenting role models, and, in- creasingly, drug abuse. One factor worth noting is the growing number of births of extremely tiny infants of approximately 500 grams (about ~ lb.) who are resusci- tated but subsequently die. Some observers believe that the changes in

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98 SCIENCE AND BABIES managing and reporting the births of these extremely immature infants are partly responsible for leveling the infant mortality rate. Furthermore, many professionals are concerned that the deepening poverty in this country and the steady decline in public funding for health services are having a negative impact on maternal health and infant mortality. While 48 states offer some prenatal care programs for poor women, restrictive eligibility requirements and a scarcity of clinics mean that such programs reach only a small percentage of the women who need them. In addition, during the recession of the early 1980s, many breadwinners lost their jobs and with them the employer-paid health insurance that often covered prenatal care. The Congressional Research Service reports that virtually all the increase in the number of uninsured Americans since 1980 is the result of declining employer-based coverage of dependents. Many factors lead to the increase in infant mortality seen in this coun- try, but this chapter concentrates on the important interactions between prenatal care, birthweight, and infant survival. It reviews the current status of health care services for women and babies in the United States, particularly the services available for pregnant women, since such care influences the health of the next generation. The chapter also surveys the many barriers that make prenatal care difficult to obtain for the very women who need it most. MATERNAL AND INFANT HEALTH THE PICTURE TODAY Key measures of the health of an industrialized society are its rate of infant mortality, its percentage of low birthweight newborns, and what proportion of its pregnant women receive prenatal care. From the mid- 1960s to the 1980s, the United States made considerable improvement in these areas. During the 1980s, however, progress toward reducing infant mortality stalled. Among blacks, in 1985 and 1986 the national decline in infant deaths became so small it was statistically insignificant. For every state that recorded improvement in its mortality rate for black infants, there was a state in which the rate climbed. On a state-by-state basis, black infant mortality rates ranged from 12.7 to 24 per 1,000 births. The average was 18 deaths per 1,000 births, which is significantly higher than the national average of 10.4 percent for all races. The death rate for white infants ranged from 7.7 to 11.3 per 1,000 births. Year-to-year fluctuations in the mortality rates for both black babies

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PRENATAL CARE 99 and white babies are to be expected, but observers at the OTA believe that the slowing of the decline in the infant mortality rate in this decade cannot be dismissed as a random variation in the trend. The U.S. newborn death rate is related in large part to the high percentage of low birthweight infants. The United States ranks twelfth in the number of infants born with low and very low birthweights. Low birthweight is an important determinant of infant health and mortality. Most low birthweight babies are immature, which means they are born before they reach their normal growth and development in the uterus. As a result, they are more likely to die during infancy or to become children who require more medical care and hospitalization than the average child. Analysts at the Children's Defense Fund find that immaturity contributes to two-thirds of the deaths of babies in their first month of life. The OTA reports that in 1980 low birthweight infants represented less than 7 percent of all newborns in the United States but accounted for 60 percent of all babies who died in infancy. LOW BIRTHWEIGHT AND INFANT MORTALITY Birthweight came to be viewed as an measure of fetal growth early in this century; a low birthweight was seen as an indicator of inadequate intrauterine growth or prematurity and the baby was not expected to live. Forty years ago the World Health Organization (WHO) adopted 2,500 grams (5 lbs. ~ oz.) as the weight below which newborns were considered to be of low birthweight. Although a low birthweight was often associated with an abbreviated gestation, in 1960 the WHO noted that this was not always true. An infant weighing less than 2,500 grams was not always premature but, instead, could be small for its gestational age. Before 1950 most infant deaths occurred after the first month of life, generally as a result of environmental factors such as infections and poor nutrition. As the incidence of such deaths fell by mid-century, there was a shift in the timing of infant deaths. After the 1950s the majority of infant deaths occurred during the neonatal period, the four weeks immediately after birth. The causes of those deaths were rooted in the pregnancy and birth process and included birth injuries, asphyxia, congenital defects, and low birthweight. The latter is a significant factor. In 1950 only 7.5 percent of newborns weighed 2,500 grams or less, yet two-thirds of the infant deaths that year occurred in among such low birthweight babies. Beginning in the

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100 SCIENCE AND BABIES 1960s the relationship between birthweight and infant mortality has been documented frequently in several countries and hospitals. The studies reveal that, compared with infants weighing a more normal 3,000 to 3,500 grams (6 lbs. 5 oz.) and up, babies weighing less than 2,500 grams are almost 40 times more likely to die in the weeks after their birth. The likelihood of death increases as birthweight decreases. If small babies survive the neonatal period, they continue to have a higher risk of death during their first year, accounting for 20 percent of infant deaths during that period. Major advances in improving infant mortality have been achieved through saving the lives of premature infants, not in reducing the preva- lence of low birthweight. In the late 1960s sophisticated monitoring and treatment methods were developed for premature infants whose undevel- oped lungs did not function properly. In the 1970s neonatal intensive care units (NICUs) became part of most large hospitals. In the 1980s improvements in respiratory therapy and mechanical ventilation began to make it possible to save the lives of newborns with very low birthweights of less than 1,SOO grams (3 lbs. S oz.~. The widespread use of NICUs is associated with a small percentage of children growing up with neurodevelopmental handicaps. Some have physical impairments that are the result of the technology itself. How serious these problems are as the child grows older and begins school and how they are affected by socioeconomic and other factors is not yet fully understood. Babies born in hospitals with NICUs have a better survival rate than those born in hospitals without them. By reducing the death rate of very small newborns, NICUs have been the principal means for the decline in U.S. infant mortality rates in recent years. In reviewing the 1986 data, observers at the Children's Defense Fund conclude: Any decline in the national neonatal mortality rate in 1986 presumably was not achieved because more infants were born healthy. Rather, more fragile infants survived the newborn period with the aid of expensive hospital technology. In contrast, the enhancement of infant birthweight, which would improve the outcome for so many newborns, has been so slight that it has had little impact on mortality figures. Some observers suggest that neonatal mortality rates ceased to drop because the reporting of births of extremely small newborns, those weigh- ing less than 500 grams (about 1 lb.), has increased at many hospitals.

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PRENATAL CARE 101 From 1981 to 1984 the number of reported births of these tiny infants rose more than those in any other category of birthweight in the United States. Almost all of these infants died during the newborn period. In earlier years such babies usually did not survive the birth process and were listed not as births but simply as fetal deaths. Today in many places they are counted as live births and, subsequently, as infant deaths. Some analysts believe one factor in the current slowdown of the infant mortal- ity decline may be this difference in managing and reporting extremely immature births, rather than a real deterioration in the health of pregnant women. POVERTY AND INFANT MORTALITY Others concerned with the rate of infant mortality in this country believe that an important factor in infant mortality rates is the progressive "dis-insurance" of the working poor, the increase in the proportion of women and infants living in poverty, and the shrinking in real dollars of subsidized health services for pregnant women and children. Poverty increases the chances of producing a low birthweight baby. The incidence of premature birth and inadequate fetal growth is greater among poor women. The causes are not clear; however, Paul H. Wise, of Harvard, and Alan Meyers, of Boston University, note there is evidence that prematurity and inadequate growth are related to elevated risk and reduced access to medical care: Poor nutrition, small stature, increased stress, and obstetric complications can all affect birth weight and are more common among poor women. A risk often overlooked is the state of a woman's health prior to conception. In this context, the effect of poverty on birth outcome may represent in part a legacy of inferior health status of poor women both before and during their childbearing years. Decreased spending on publicly funded health care in- this country during the 1980s has paralleled the increase of poverty among women and children. In its 1988 book, Healthy Children: Investing in the Future, the OTA reports that from 1978 to 1984 the percentage of infants residing in poor families rose from 18 to 24 percent. At the same time, Medicaid expenditures in constant dollars per child recipient declined by 13 percent and federal funding for three important sources of primary health care for poor women and children- maternal and child health services, community health centers, and migrant health centers—declined in constant dollars by 32 percent.

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102 SCIENCE AND BABIES Sara Rosenbaum of the Children's Defense Fund and her co-investi- gators found in 1986 that in 15 states hospitals denied admission to women about to deliver babies. In another 13 states hospitals were refus- ing to admit women who were not in "active" labor. "Patient dumping" was recorded in 6 other states. The researchers also found that one or more hospitals in 23 states required a cash deposit if a woman wanted to preregister for delivery. A woman who could not pay a deposit would not be admitted for delivery unless she was in advanced labor and was considered an emergency case. The OTA found that putting health care out of the reach of increasing numbers of poor women and children would have had only a "modest effect" on the overall infant mortality rate by the mid-l9SOs. However, the report also pointed out: Yet, for a particular infant, being born to a mother in poverty with limited access to prenatal and infant care substantially raises the risk of dying in the first year. Thus, cutting back on funding for health care services at the same time that infant poverty rates in this country were increasing raised the risks of infant mortality for these babies. THE EFFECTS OF LOW BIRTHWEIGHT Helping low birthweight newborns to survive is often only part of the medical care they will require. The Institute of Medicine (IOM) Committee to Study the Prevention of Low Birthweight, convened in 1982, found that many of these babies are at increased risk for a number of health problems, which in turn engender financial and family stresses. In its 1985 report, Preventing Low Birthweight, the committee notes "this increased risk has implications for health services, and possibly for educational services and family function as well." Health Problems Neurodevelopmental Handicaps The most obvious side effect of low birthweight is the substantial prevalence in these youngsters, as they grow, of such neurodevelopmen- tal handicaps as cerebral palsy, seizure disorders, and other neurologi- cally based deficits. Low birthweight infants are three times as likely as normal-weight babies to have neurological problems, and the risk increases with every decrease in weight level.

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PRENATAL CARE Congenital Anomalies 103 Because defects can cause premature birth, immature infants are twice as likely as newborns of normal weight to have a serious inborn defect; in very immature babies these anomalies occur three times as often. They range from having extra fingers or toes, strabismus (a condition in which the muscles that control the eye are weak, affecting eye alignment and vision), to serious brain or heart defects. Respiratory Tract Problems The lungs of low birthweight babies often are immature, and the infants may have respiratory distress syndrome or hyaline membrane dis- ease. As they grow up, such children may experience repeated lower respiratory tract infections and abnormal lung functioning. The persis- tence of these problems is particularly common among children who as newborns required prolonged ventilator support. Side Effects of Technology The technology used today to diagnose and treat low birthweight newborns can have deleterious effects on the baby. Best known is the effect of oxygen administration on the eyes of immature infants: It may cause retrolental fibroplasia, severely damaging eyesight and sometimes causing blindness. The increased incidence of problems experienced by low birthweight babies means a greater use of health care services. In its report on these infants, the IOM committee said: The length of hospital stay in the neonatal period for infants who survive to the first year of life averages 3.5 days for normal birthweight infants, but is much longer for smaller infants: 7 days for those between 2,001 and 2,500 grams at birth; 24 days for those between 1,501 grams and 2,000 grams; 57 days for those less than 1,500 grams; and 89 days for those less than 1,000 grams. The committee found that in addition to the lengthy hospital stays many of these babies require when they are born, a substantial proportion of very immature newborns are rehospitalized during their first year and require more physician visits.

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104 SCIENCE AND BABIES Family Stresses Not surprisingly, the birth of an immature infant who requires inten- sive hospital care and may have chronic, sometimes disabling physical problems can produce tremendous stress on the family. The bonding be- tween mother and baby often is disrupted, and a great deal of anxiety is produced by the infant's critical condition. These factors can also have a negative effect on later parenting behavior and on the interaction between the parents and the child. Financial Stresses The cost of the intensive medical care needed by immature infants frequently is enormous. Even families with insurance still must pay as much as 20 percent of hospital charges. Families without insurance often must- pay as much as one-third of the total hospital bill. According to studies by the Alan Guttmacher Institute, the average bill for the delivery and care of a healthy baby is about $4,300, or one-fifth of the income of a typical young couple. If the birth is complicated, the bill can easily be higher. The OTA found that in Maryland in 1986 the extra cost for hospital care for a low birthweight infant was $5,236. (That year the average hospital cost per admission in Maryland was within one-half percent of the national average.) A study at the University of Pennsylvania found that if an infant was discharged earlier and received follow-up nursing care at home, the cost of its hospitalization could be reduced by 25 percent, lowering the hospital charge for the infant's medical care to an average of $3,763. The average 1986 hospital charge for the care of a normal-weight newborn was $658. Low birthweight babies have higher rates of respiratory, gastroin- testinal, and infectious illnesses than do infants born at normal weights. Compared to normal-weight newborns, twice as many low birthweight babies are rehospitalized at least once during their first year. The extra cost of rehospitalization is conservatively estimated by the OTA at about $800 per low birthweight child. This does not take into account doctors' fees or the high rates of hospitalization of very sick premature infants who did not survive infancy. A large proportion of low birthweight infants are born to families living in poverty and to teenage mothers who do not qualify for Medicaid under individual state criteria. In many of these cases the cost of care for

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PRENATAL CARE 105 a low birthweight child is carried by the hospital and passed on to the public. In addition, many working families have no health insurance or have insurance that provides only limited coverage. As a result, the cost of caring for low birthweight babies is borne by the public. PREVENTING LOW BIRTHWEIGHT: THE ROLE OF PRENATAL CARE Studies demonstrate that infant mortality and low birthweight can be alleviated if the pregnant mother receives sustained, quality medi- cal care beginning early in her pregnancy, so that incipient problems can be detected and corrected before they affect the fetus. Newborns whose mothers had no prenatal care are almost five times more likely to die than babies born to mothers who had early prenatal care. Good comprehensive care includes screening for potential problems; education and counseling about the connection between nutrition, life-style, and pregnancy outcome; and medical treatment as needed. Almost all studies of prenatal care have some methodological short- comings; despite this, a review of more than 55 studies by the OTA revealed that the weight of evidence "supports the contention that two key birth outcomes low birthweight and neonatal mortality—can be improved with earlier and more comprehensive prenatal care, especially in high risk groups such as adolescents and poor women." COST-EFFECTIVENESS OF PRENATAL CARE Although the value of prenatal care is unquestioned, what is not yet clearly understood is exactly which preventive measures are effective and when during a normal pregnancy they should be applied. Also unresolved are questions regarding which components of prenatal care are most healthful and cost-effective and how best to reach the women who most need such care. The OTA performed a cost-effectiveness analysis to determine how health care system costs would be affected if all pregnant poor women were enrolled in Medicaid, a policy made possible by the Omnibus Budget Reconciliation Act of 1987. "Poor" in this instance refers to women with incomes below 100 percent of the federal poverty level. The OTA estimates that offering such Medicaid eligibility would bring an additional 18.5 percent of poor women into prenatal care during their first trimester at a national cost of $4 million annually. The OTA also

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106 SCIENCE AND BABIES To assure the best possible outcome for a mother and her baby, medical care plus nutritional, educational, and other support services are vital. Credit: National Institute of Child Health and Human Development estimates that, for every immature birth prevented by better prenatal care, the U.S. health care system saves between $14,000 and $30,000 in expenses for newborn hospitalizations and long-term health services. For the savings to outweigh the costs, between 133 and 286 low birthweight births would have to be averted nationally among the newly eligible Medicaid users of early prenatal care. Current evidence suggests that it is indeed feasible to reduce the number of low birthweight births considerably well beyond the breakeven point. Several reasonably well-designed studies on the relationship be- tween early prenatal care and birthweight have demonstrated effects that were at least twice as great as the effects needed for the Medicaid ex- pansion to pay for itself. The OTA notes that early prenatal care also can prevent an unknown number of newborn deaths. A study by Theodore Joyce and his colleagues at the National Bu- reau of Economic Research compared the cost-effectiveness of various

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PRENATAL CARE 115 In a 1984 survey of primary care physicians, 36 percent of obstetricians said they did not provide care to Medicaid patients. By comparison, 25 percent of general practitioners, 23 percent of pediatricians, and 20 per- cent of internal medicine practitioners did not accept Medicaid patients. Physicians give many reasons for refusing to accept Medicaid pa- tients: extensive paperwork, slow claims processing, long-delayed and uncertain payments, and reimbursement rates that represent only a frac- tion of the physician's actual costs or usual fee. This latter claim is borne out in a comparison of Medicaid versus the usual obstetric fees, which include prenatal care. Usual charges in 1986 averaged $830 for a vaginal delivery; the average Medicaid reimbursement was $554. Medicaid reim- bursement rates have risen in recent years, yet they remain substantially lower than customary physician charges. In addition, the IOM prenatal care study committee reported: The problem of low Medicaid reimbursement is exacerbated by the high proportion of Medicaid women who are high-risk patients. Because of multiple health and social problems, these women often need more frequent and comprehensive maternity care than more affluent women' and such extra care can be time-consuming and expensive to provide. Indeed, the case could be made, the committee says, that because many pregnant women enrolled in Medicaid are at high risk, reimburse- ment for their care should be greater than the average obstetrical fee. Restrictions on Nurse-Midwives In both rural and urban areas, certified nurse-midwives and nurse practitioners have been especially effective and experienced in managing the care of high-risk pregnant women. Obstetric customs and, in many states, legal restrictions have limited the number and the scope of practice of nurse practitioners and nurse-midwives. Although in many European countries they provide the majority of maternity services, in the United States only some 2,600 nurse-midwives are actively practicing. THE COST OF MALPRACTICE INSURANCE Malpractice insurance premiums for practitioners who provide ob- stetrical services doubled between 1982 and 1985. The reasons are many and include changes in medical technology, changing standards of prac- tice, and an increase in large awards and in the size of lawyer contingency fees.

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116 SCIENCE AND BABIES Premium costs and increasing anxiety about the risk of a malpractice suit have driven many providers to discontinue their obstetrical services or to cut back the number of their obstetric patients. When the ACOG surveyed its members in 1983 and 1987, it found that, because of mal- practice concerns, the proportion who reduced the number of high-risk patients they saw had increased from 18 percent to 27 percent. These physicians also had decreased the number of deliveries they performed, and a substantial number said they had stopped practicing obstetrics entirely. A similar member survey by the American Academy of Family Physicians in 1986 revealed that 23 percent had stopped providing ob- stetric services because of malpractice concerns. The malpractice situation has a particularly negative effect on public clinics, which are having a difficult time obtaining liability insurance and finding physicians willing to practice obstetrics. Chronically underfunded inner-city health centers often are forced to eliminate obstetric services because they cannot afford the insurance. As Sara Rosenbaum and Dana Hughes of the Children's Defense Fund point out: Even though both Community Health Centers and nurse midwives have very low malpractice claims profiles compared to other providers of obstetrical care, their rates have risen dramatically.... At one center in Florida, malpractice coverage for prenatal care services is $4,000 annually per staff member. Coverage for delivery, however, would add $25,000 in costs per staff person. Dr. Klerman advises that physicians may use the fear of malpractice suits as a reason for reducing or eliminating their Medicaid or uninsured caseload, due to an unsubstantiated belief that these women are more likely to sue. The recently published IOM study of medical professional liability and the delivery of obstetrical care found that this perception by physicians is not supported by the data available. The committee notes that people with low incomes generally have less access to the legal system. In addition, medical malpractice actions are brought by attorneys on a contingency fee basis. Because awards usually are based on lost earnings, among other things, it would appear that attorneys have less financial incentive to serve poor plaintiffs. A Government Accounting Office study of malpractice claims found that the average expected payout for a Medicaid plaintiff was $52,000; the average for a privately insured plaintiff was $250,000. Most studies regarding the relation of income to medical malpractice

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PRENATAL CARE 117 suits do not bear out doctors' perceptions that they are at greater risk of being sued by poor or Medicaid patients. The Programs Lack of Coordination Among Programs Five principal federal programs supply prenatal care and related ser- vices to low-income women: Medicaid; Maternal and Child Health Ser- vices Block grants; the Special Supplemental Food Program for Women, Infants, and Children; community health centers; and migrant and rural health centers. Each has a different function and, if they could work together, they would furnish pregnant women with many of the maternity services they need. Unfortunately, the programs often are not well coordinated at the community level; their connections to other public services and to pri- vate physicians range from weak to nonexistent. The IOM prenatal study committee found that coordination between programs can be difficult because each is independently organized and has its own administration, rules, and constraints. A woman may be eligible for Medicaid coverage and for prenatal care services from a local health department clinic, but enrolling in both may require meeting different eligibility standards, ap- plying at different sites, completing different applications, and furnishing different documentation. Pregnancy testing services are another example of poor coordination among programs. Although testing services may provide the telephone numbers of prenatal clinics, many services do not have close ties to prenatal care clinics. The lack of a direct relationship does not help women whose pregnancy tests are positive to make an appointment for the important first-trimester evaluation. Close ties to prenatal care clinics would expedite appointments, making it easier for clients to start maternity care. Medicaid Application Procedures Medicaid is the major source of payment for prenatal services ob- tained by pregnant poor women, yet rates of enrollment among women eligible for the program vary as much as 11 to 84 percent from state to state, and many eligible women do not enroll. The reasons are many. Medicaid programs rarely publicize their benefits or explain how to en- roll, and their brochures seldom note that pregnancy may be grounds

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118 SCIENCE AND BABIES for eligibility. Although a few states have streamlined their enrollment procedures, in many they often are excessively complicated. Application forms can run from 4 to 40 pages, and a typical form may include 80 to 100 questions. Completing an application often requires two or three trips to the Medicaid office and long waiting times, and eligibility can be denied on the basis of a single missing document, such as a utility bill. In addition, eligibility must be redetermined periodically during pregnancy; changes in household composition or expenditures can stop Medicaid coverage in the middle of a pregnancy, unless the state has adopted the continuous eligibility option. The long waiting periods between making an application and receiving a Medicaid card make it difficult to receive prenatal care during the first trimester. Even physicians and clinics who accept Medicaid as payment may insist that the enrollment process be completed and the patient have her card in hand before they schedule an appointment. As the IOM committee observed, The difficult application process, the complexity of the program and the great variations in the program across states create the impression of a system designed to discourage rather than encourage entry into prenatal care. Although the committee noted that Congress and the states have taken steps recently to broaden Medicaid eligibility, it also observed that the program remains limited in its ability to draw low-income women into prenatal care promptly and with a minimum of bureaucratic harassment. Other Barriers The traditional obstacles to receiving early and regular care continue to hinder women from receiving necessary services. Long-standing barriers include the following. Transportation These impediments to care include the need to travel long distances to reach a clinic, the high cost of transportation, and no means of trans- portation at all. In some cities poor neighborhoods have limited public transportation services, and rural areas often have no bus or rail services. The IOM committee pointed out that the lack of a car and the transporta- tion problems that result have become a mark of poverty and can form insurmountable baIriers to obtaining health services.

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PRENATAL CARE Child Care 119 If a woman already has children, her use of prenatal health services is affected by the availability of child care. If she can not find or afford a babysitter, she may have to bring her children with her. If there are long waits at the clinic and child care is not provided, the burden of taking the children may outweigh any perceived benefits of the visit. Clinic Hours The problems of accessibility created by the need to travel long dis- tances, inadequate transportation, and lack of child care are exacerbated by limited clinic hours. Most clinics are open only on weekdays from ~ or 9 a.m. to 5 p.m., making it difficult for women who work or go to school to schedule appointments. Women in low-paying jobs lose wages for time not worked or risk disapproval for taking time off. When some District of Columbia clinics began offering prenatal appointments during the evening and weekends, the number of patients seeking care at those clinics increased markedly. Long Waiting Times Long waits are common in publicly financed health centers, particu- larly in those using the block appointment system. In that system women are told to come either at ~ or 9 a.m. or at 1 p.m., and then they are seen on a first-come, first-served basis. For most patients this means a wait of 2 to 3 hours, an experience patients describe as frustrating and humiliating. It can also be costly in terms of time lost from work or in child care expenses. A study of low-income prenatal care patients in New York City found that the women viewed long waiting times as a sign of the staff's disregard for the value of their time; they said it was especially insulting to wait several hours and then have only a few minutes with a . . . physician. Staf/: Attitudes The use of prenatal care can also be influenced by the way clinic staff treat patients. Seeing a different doctor each time, receiving hurried or impersonal care, and dealing with rude or indifferent appointment clerks or receptionists discourage patients from continuing prenatal care. Socioeconomic differences between staff and patients may add to an already negative atmosphere, and language differences compound the

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120 SCIENCE AND BABIES problem. Even something as simple as not having enough chairs for waiting patients conveys the message that the patients are not wanted. Hiding the Clinic Few clinics let prospective patients know the clinic location or how they can make appointments. Studies report that 5 to 18 percent of women who received little or no prenatal care before the birth of their child did not know where to find such services. The IOM committee found that few telephone directories have a listing for "prenatal care" or a similar phrase. Cultural and Personal Barriers Personal attitudes and the cultural characteristics of the pregnant woman can also impede adequate prenatal care. The IOM panel found that the use of prenatal care is affected by the woman's attitude toward her pregnancy and prenatal care, whether she views such care as useful, and by her cultural values and beliefs, her life-style, and certain psychological characteristics. Attitudes Whether a woman makes an effort to find prenatal care appears to depend on how she regards her pregnancy. If it is unplanned and she views it negatively, she is more likely to delay care and to make infrequent clinic or physician visits. Accordingly, most observers feel that a reduction in unplanned pregnancies would lessen the incidence of late care. Not all women feel that prenatal care is important. Some believe that pregnancy is a normal function and that medical care is needed only when a pregnant women is unwell. Failure to recognize the signs of pregnancy also is a factor in delaying care. Studies demonstrate that between 16 and 33 percent of the women who did not receive sufficient care did not know for some time that they were pregnant. This is particularly true of first-time pregnant women, especially those still in their teens. "Not knowing I'm pregnant" also is a form of denial, a marker of an unintended and usually unwanted pregnancy. Fears can be substantial barriers. They can include fear of medical personnel or procedures, fear of the reaction of others to the pregnancy,

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PRENATAL CARE 121 fear that one's status as an illegal alien may be discovered, and fear of pressures to change life-style habits such as substance abuse, smoking, or eating disorders. For some women the stress and pressures of their lives may prevent them from obtaining adequate prenatal care. Anxiety about lack of money, housing difficulties, difficulties with the baby's father, lack of emotional support, and other problems can interfere with finding care. Denial also interferes with the use of prenatal care. Although this can be seen in women of any age, it is most prevalent among teenagers. As noted in Chapter 4, some adolescents simply do not want to believe that they can get pregnant. The denial continues into pregnancy. Frank F. Furstenberg's survey of teenage mothers in Baltimore found that half the adolescents did not tell their mothers about their pregnancy until several months had elapsed. These psychological problems are difficult to correct, particularly through public policy procedures, Dr. Klerman observes. But she be- lieves that increased funding for Medicaid and for public prenatal clinics, changes in private insurance regulations so more women are covered for maternity care, and aggressive outreach and educational campaigns will help appreciably and are within the scope of national and state legislative concerns. She adds that, "Attention should be paid to these items, rather than blaming the victim for neglect of needed care." Homelessness Not surprisingly, women who are homeless and living in shelters have difficulty obtaining prenatal care. Forty percent of pregnant women living in hotels for the homeless in New York City during 1982 and 1984 received no care at all. Substance Abuse Pregnant women who are aware that their life-styles risk their health and the health of their babies may also be afraid to seek care because they expect pressure to change such habits as heavy smoking, eating disorders, or the abuse of drugs or alcohol. Substance abusers, especially, may avoid seeking prenatal care because of the disorganization and stress in their lives. They also fear that their drug use will be discovered, they might be arrested, and their other children might be taken into custody. Several recent studies show that a significant number of women in

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122 SCIENCE AND BABIES the childbearing years of lS to 35 frequently use cocaine and other drugs. Substantial percentages of women who obtain prenatal care late or not at all abuse drugs, particularly heroin and cocaine. The number of babies who test positive for a variety of illegal drugs is increasing steadily in the United States, particularly in large cities. The babies of drug-using mothers often have multiple problems that may require intensive care and long hospital stays: low or very low birthweight, drug addiction, neurodevelopmental disorders, and congenital defects. A study of 75 cocaine-using mothers and their infants by Dr. Ira Chasnoff, of Northwestern University Medical School, found that many women who use cocaine become pregnant without realizing it and con- tinue to use the drug. Even if they give up cocaine after the first trimester, these women remain at high risk for miscarriage. If they continue to use cocaine throughout their pregnancy, they increase their risk of having a preterm delivery and a low birthweight infant or of having a full-term baby who is smaller than normal. A study of 1,226 infants and mothers at Boston City Hospital by Barry Zuckerman and other researchers from Boston University had similar findings. All the women were drawn from the prenatal clinics held by the hospital. Approximately half the women used marijuana or cocaine; in all other demographic characteristics, including use of cigarettes and alcohol, the women's backgrounds were similar. Drug use was determined by urinanalysis, self-reporting, or both. The majority of mothers in this study were low-income women and most were single. In all measures of newborn growth, the infants whose mothers used marijuana or cocaine were significantly smaller than the babies born to nonusers. In addition, babies born to cocaine-abusing mothers were at greater risk of being premature. With one exception, congenital mal- formations were not significantly more frequent among babies born to mothers who used these two drugs. Among the babies of cocaine users, however, the proportion of one major or three minor congenital problems was considerably larger (14 percent versus g percent) than among the infants of nonusers. Dr. Zuckerman and his colleagues point out that many of the women who used drugs also exhibited a life-style associated with depressed fetal growth. They used alcohol and cigarettes, and the pregnant cocaine users also were found to have a greater incidence of sexually transmitted diseases. Cocaine users weighed less before pregnancy and gained less during its course. In the presence of these multiple risk factors, the

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PRENATAL CARE 123 researchers note, the use of cocaine or marijuana further impairs fetal - growth. Although pregnancy may serve as an impetus for a woman to stop using alcohol or cigarettes, drug users appear to find it much more difficult to abstain during pregnancy. RESEARCH NEEDS Although many agencies and programs help provide health care to pregnant women and young children, increasing numbers of pregnant women do not receive maternity care until the third trimester or obtain no care at all. Health care professionals have suggested several approaches for drawing into care those low-income women who are at elevated risk for poor pregnancy outcomes. Some advocate scrapping current national programs and instituting a new comprehensive one; others recommend changing current services so they can reach more women and provide care in a coordinated, user-friendly way. More research is needed on these issues: · A basic understanding of the mechanisms that underlie inadequate intrauterine growth and the premature onset of labor is necessary to develop preventive measures. The programs that are most successful in bringing women into prenatal care early and in keeping them there should be identified. · When financial and access barriers are reduced, what can be done to bring into care those women who have psychological problems or educational deficits that prevent them from seeking prenatal care? · Do regular home visits by health care personnel help increase a pregnant woman's compliance with medical recommendations? What is the minimum number of visits that are useful? · What programs are successful in helping pregnant women change the life-styles that endanger the health of the fetus? · What services can be offered to drug-addicted women and how and where should such services be made available in order to keep these women in care both for their pregnancy and to treat their addiction? · Teenagers and other young unmarried women need to be made more aware of the importance of prenatal care; identifying the most influential and cost-effective components of educational programs would be useful before large-scale efforts are designed.

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124 SCIENCE AND BABIES CONCLUSION Since the beginning of this century, the infant mortality rate in the United States has steadily declined. That decline slowed during the l980s, showing almost no progress from 1984 to 1986. Several factors are implicated in this leveling off of infant deaths: a deepening of poverty in the United States; a more careful reporting of extremely low birthweight infants who die almost immediately, which in the past would have been reported as fetal deaths or would have gone unreported altogether; a continuation of the large proportion of births to teenagers and unmarried women, who often have low birthweight babies; and an increase in the percentage of women receiving prenatal care late or not at all. The effect of these factors has been exacerbated by an increase in the number of women, particularly young women, who are not covered by maternity insurance, by the difficulty and the delays that pregnant women experience when they try to enroll in Medicaid, by a decline in the number of physicians accepting low-paying Medicaid patients, and by a lack of coordination among clinics. In general, the picture is one of more women being at risk for having babies who are preterm or whose fetal growth has been retarded, while at the same time services to improve the health of such mothers and their infants are reduced and fragmented. ACKNOWLEDGMENT Chapter 5 was based in part on a presentation by Lorraine V. Klerman. REFERENCES Alan Guttmacher Institute. 1987. Blessed Events and the Bottom Line: Financing Maternity Care in the United States. New York: The Alan Guttmacher Institute. Braveman, P., G. Oliva, M.G. Miller, R. Reiter, and S. Egerter. 1989. Adverse outcomes and lack of health insurance among newborns in an eight-county area of California, 1982-1986. New England Journal of Medicine. 321 :508-513. Brooten, E., S. Kumar, L. Brown, et al. 1986. A randomized clinical trial of early hospital discharge and home follow-up of very low birthweight infants. New England Journal of Medicine. 315 :934-939. Chasnoff, I., D.R. Griffith, et al. 1989. Temporal patterns of cocaine use in pregnancy. Journal of the American Medical Association. 261: 1741-1744. French, H.W. 1989. Tiny miracles become huge public health problem. N.Y. Times, February 19. Gold, R.B., A.M. Kenney, and S. Singh. 1987. Paying for maternity care in the United States. Family Planning Perspectives. 19~51:190-206.

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PRENATAL CARE 125 Hughes, D., K. Johnson, S. Rosenbaum, and J. Liu. 1989. The Health of America's Children: Maternal and Child Health Data Book. Washington, D.C.: Children's Defense Fund. Institute of Medicine, Committee to Study Medical Professional Liability and the Delivery of Obstetrical Care. 1989. Medical Professional Liability and the Delivery of Obstetrical Care: Volume I. Washington, D.C.: National Academy Press. Institute of Medicine, Committee to Study Outreach for Prenatal Care. 1988. Pre- natal Care: Reaching Mothers, Reaching Infants. Edited by Sarah S. Brown. Washington, D.C.: National Academy Press. Institute of Medicine, Committee to Study the Prevention of Low Birthweight. 1985. Preventing Low Birthweight. Washington, D.C.: National Academy Press. Joyce, T., H. Corman, and M. Grossman. 1988. A cost-effectiveness analysis of strategies to reduce infant mortality. Medical Care. 26:348-360. Kleinman, J.C., and S.S. Kessel. 1987. Racial differences in low birth weight. New England Journal of Medicine. 317:749-753. McCormick, M.C. 1989. Long-term follow-up of infants discharged from neonatal intensive care units. Journal of the American Medical Association. 261:1767- 1772. Moore, T.R., W. Origel, T.C. Key, and R. Resnik. 1986. The perinatal and economic impact of prenatal care in a low-socioeconomic population. American Journal of Obstetrics and Gynecology. 154:29-33. Murray, J.L., and M. Bernfield. 1988. The differential effect of prenatal care on the incidence of low birth weight among blacks and whites in a prepaid health care plan. New England Journal of Medicine. 319:1385-1391. National Center for Health Statistics. 1989. Advanced Report of Final Health Statistics, 1987. Monthly Vital Statistics Report. Vol. 38, No. 5 Supplement. September 26. National Commission to Prevent Infant Mortality. 1988. Death Before Life: The Tragedy of Infant Mortality. Washington, D.C.: National Commission to Prevent Infant Mortality. Rosenbaum, S., D.C. Hughes, and K. Johnson. 1988. Maternal and child health services for medically indigent children and pregnant women. Medical Care. 26:315-332. Schur, C., A.B. Bernstein, and M.L. Berk. 1987. The importance of distinguishing Hispanic subpopulations in the use of medical care. Medical Care. 25:627-641. U.S. Congress, Office of Technology Assessment. 1988. Healthy Children: Investing in the Future. OTA-H-345. Washington, D.C.: U.S. Government Printing Office. U.S. Congress. 1989. House Select Committee on Children, Youth, and Families. Children and Families: Key Trends in the 1980s. 100th Congress, Second Session, 1989. Washington, D.C.: U.S. Government Printing Office. Wise, P.H., and A. Meyers. 1988. Poverty and child health. Pediatric Clinics of North America. 35(61: 1169-1186. Zuckerman, B., et al. 1989. Effects of maternal marijuana and cocaine use on fetal growth. New England Journal of Medicine. 320:762-768.