TIP Audience and Use

It is hoped that this TIP will be read and used by a wide spectrum of people. Although it is a medically oriented document, it is written to inform and educate a range of people in the health care field (including physicians, nurses, social workers, and administrators) as well as Federal and State legislators and others who set and implement public and private policy on matters relating to maternal and child health and AOD use and abuse.

Some sections are more technical than others, and may not be appropriate for all readers. However, other sections are designed to educate and support not only people working in the field, but also parents and caretakers of infants who have been exposed to drugs.

In sum, this document is intended to be of practical use to many, and numerous suggestions are included. Please note that, despite frequent usage of the words "should" and "must," many of the suggestions offered herein are just that - suggestions - intended to assist a broad cross-section of communities in improving the care and services provided to drug-exposed infants and their families.

TIP embraces Five Key Principles

Five basic principles or key points should be kept in mind while reading this TIP.

• Cultural and racial concerns must be considered in every aspect of the treatment process for drug-exposed infants and their families.

The importance of developing culturally relevant services cannot be stressed enough. In many communities, services should also be multilinguistic. It is vital for program staff to have a keen understanding of the ways in which the culture, race, and language of the woman and her family - as well as the culture, race, and language of caretakers and service providers - affect most of the issues discussed in this TIP. Multiracial and multicultural programming is essential in today's society. People providing treatment must be aware of how their own cultural and racial backgrounds affect the delivery of services.

• Fathers should be included in treatment to the fullest extent feasible. Treatment should be family centered.

The involvement of the father in the treatment process should be encouraged. The role of the father is critical, often influencing the mother's preconception behavior and her activities during pregnancy, as well as after the child is born. The father plays a significant biological role in the development of the infant, and can also play a vital role in many other aspects of the child's growth. It is understood that, in some instances, it may not be possible to locate the father; however, in many instances, a father may be eager to be involved if he is approached. Although the mother and the infant are highlighted throughout this TIP, the potential role of the father should be considered in all aspects of the treatment process as well.

In addition, programs should strive to be family-centered, working to involve the mother's and father's extended family members (grandparents, siblings, aunts, uncles) and significant others in the treatment process. Models of programs that support the family should be encouraged.

• A lack of financial resources limits the ability of many communities to implement all the guidelines presented in this TIP. Community coordination and collaboration can help bridge the gap in resources.

The guidelines presented herein were developed with the intention of providing assistance and support to the wide range of dedicated service providers caring for drug-exposed infants and their families within a wide range of communities and agencies. The consensus panel recognizes that many communities and agencies have insufficient resources to implement many of the guidelines offered in this TIP. However, it is hoped that people working in such communities or agencies will not be discouraged by the review of this information, and will utilize the guidelines as part of an effort to improve the availability of treatment resources. The TIP strives to encourage individuals and agencies to increase interagency coordination and community involvement - activities that can help bridge the gap in limited resources.

• Interdisciplinary training is essential in effectively serving drug-exposed infants and their families.

The problems in effectively serving drug-exposed infants and their families are many, challenging professionals from various disciplines to learn from each other and to work together in a coordinated manner. Training programs are essential in this coordinated learning process. Agencies should aim to creatively integrate initial and ongoing training strategies for all levels and categories of staff who serve drug-exposed infants and families.

• The problems of drug-exposed infants are present in communities throughout the United States, cutting across all income levels.

Despite popular mythology to the contrary, the abuse of licit and illicit drugs is widespread in middle- and upper-income communities and households across the country. Thus, drug-exposed infants are present in households representing all income levels, and are by no means an exclusive problem of low-income families.

Epidemiology of Infant Drug Exposure

National incidence rates have been estimated of infants exposed to legal and illegal drugs in utero. A pilot study of 36 primarily urban hospitals estimated that 11 percent of all infants are exposed to alcohol or other drugs in utero each year (Chasnoff, 1989c). These figures are among the highest estimates and are probably the ones most often cited by persons advocating that increased resources be directed to this problem. The American Academy of Pediatrics (1990) estimates that one of every 10 newborns in the United States has been exposed to an illicit drug. The U.S. General Accounting Office (GAO) (1990) reviewed data from the National Hospital Discharge Survey, and found a much lower number of drug-exposed infants - fewer than 14,000. However, the GAO acknowledges that these figures represent a substantial undercount because not all women or infants are screened or tested for exposure.

Examining the same database (hospital discharges), and adjusting for underreporting, other investigators estimated that about 38,000 drug-exposed babies were born in 1987. This study also found an estimated 361 percent increase in the number of drug-exposed newborns between 1979 and 1987, with most of the increase occurring after 1983. The authors cited data suggesting that the increase in incidence slowed significantly after 1988 (Dicker and Leighton, 1991).

Local studies suggest that a large number of newborns were exposed to drugs, with the number rising sharply during the 1980s:

• New York City - From 1983 through 1987, the number of babies exposed to drugs in utero rose from 7.9 to 20.3 per 1,000 births. In 1989, more than 5,000 babies were born drug exposed. One Brooklyn hospital reported that 14 percent of newborns tested positive for cocaine.
• Dallas, Denver, Oakland, Philadelphia, and Houston - All these cities reported threefold to fourfold increases in the number of drug-exposed infants born between 1985 and 1988 (Kandall, 1991b).
• Boston - In 1984, a city hospital reported that 17 percent of mothers reported the use of an illicit drug at least once during pregnancy and 8 percent reported the use of cocaine. A later study (1989) in the same hospital showed that 31 percent of pregnant women had used marijuana and 18 percent had used cocaine (Khalsa and Gfroerer, 1991). (Although not yet fully documented, there is a new trend of increased heroin use throughout the country - a phenomenon not unusual given the increased use of cocaine. Historically, whenever a cocaine epidemic subsides, it is followed by an increase in heroin usage.)

More reliable national data may be forthcoming in the near future. The National Pregnancy and Health Survey, sponsored by the National Institute on Drug Abuse, will provide data on the prevalence of licit and illicit drug use by pregnant women, as well as limited data on infant birth weight and length of hospital stay. These data are eagerly awaited by researchers and practitioners in the field and will certainly be useful. However, additional epidemiologic and etiologic studies will be needed to determine the extent of the problem of infant exposure to licit and illicit drugs (Khalsa and Gfroerer, 1991).

Difficulties in obtaining national data are due in part to problems in diagnosing in utero drug exposure, especially to cocaine. As summarized by Bandstra and Burkett (1991), these problems include: 1) the unreliability of mothers' self-reports, 2) the limitations of urine toxicology techniques, and 3) the nature of observable clinical conditions (for example, prematurity, intrauterine growth retardation) associated with drug exposure, many of which require lengthy differential diagnoses and have multiple complex etiologies besides drug exposure. These problems are compounded when women do not self-report due to fear of prosecution.

Another reason for sketchy and inconsistent national data is the lack of uniformity in hospital policies and procedures for maternal and infant drug screening and testing. In the GAO study cited previously, medical records were examined at a small sample of hospitals. Some hospitals had no protocol for drug testing, whereas others tested only if the mother reported drug use or the infant showed signs of drug exposure. In hospitals serving primarily non-Medicaid patients, drug screening was notably less practiced, with over half of the hospitals having no protocol for identifying drug use during pregnancy. Lack of uniform hospital policies and procedures results in prejudicial and inaccurate detection practices, which may lead to stigmatization of minority children and differential approaches by social service agencies.

Dicker and Leighton (1991) point out a third possible reason for widely differing epidemiologic estimates by drawing a distinction between "drug-exposed" and "drug-affected" infants. Drug-exposed infants have been exposed to a drug or drugs (even if only once) during the mother's pregnancy. In contrast, drug-affected infants are found at birth to have symptoms diagnosed by hospital staff that are due to drug use by the mother. Thus, being drug affected is a subset of being drug exposed in epidemiologic studies, but it is not always clear which variable is being studied. Please note that in this report, the term "drug-exposed" is used for infants and children with a history of maternal drug abuse during pregnancy and for infants who have exhibited observable effects of maternal drug abuse and who have had a positive toxicology screen at birth. The term "drug" in this report refers to legal and illegal drugs.

Mothers and Families

For a substance-using mother, the birth of a drug-exposed infant is both a crisis and an opportunity. The mother - and the father, too, in many instances - often feels an overwhelming sense of guilt about the baby's condition. Cocaine-exposed babies may be lethargic, unresponsive, and disorganized in sleeping and feeding. When awake, they can be easily overstimulated and are often irritable. Such characteristics make parent-infant interaction difficult and unrewarding, and can lead parents to frustration, detachment, and avoidance. The stressful environment of substance-abusing women often includes physical or sexual abuse, single parenthood in a setting of maternal drug-use, and limited social support; these factors are profoundly detrimental to their parenting ability. Many such mothers are themselves victims of poor parenting, lack information on characteristic infant behaviors, and have unrealistic expectations about the abilities of babies and children (Freier, Griffith, and Chasnoff, 1991). On the other hand, the baby's birth may give the mother as well as the father the most powerful motive possible to undergo treatment and seek recovery. Interventions during the postnatal period must combine the goals of helping the mother abstain from drug use and assisting her with other complex social needs. Paramount among these needs is assistance in successful parenting. If possible, interventions with the father should also take place during the postnatal period.

Health Services and Cost Of Care

The cost of caring for drug-exposed infants is enormous, whether measured by the day, the neonatal treatment episode, or the entire spectrum of interventions during infancy and early childhood. A hospital in Los Angeles reported that the per-day cost of caring for a drug-exposed infant in a neonatal intensive care unit ranges from $750 for a mild case to $1,768 for a severely affected infant (New York Times, December 24, 1991). Total hospitalization charges in the newborn period are notably higher for drug-exposed than for unexposed infants. Phibbs et al. (1991) examined the added neonatal cost and length of hospital stay associated with fetal cocaine exposure among 355 infants born at Harlem Hospital in New York City. These investigators found that neonatal hospital costs were $5,200 more for cocaine-exposed infants than for unexposed infants ($7,957 vs. $1,226). Crack cocaine exposure resulted in even greater cost, as did exposure to other illicit substances in addition to cocaine. Projecting their findings to the national level, the authors estimate that these costs would total nearly $500 million. The GAO (1990) studied a small sample of hospitals and found hospital charges were up to four times higher for drug-exposed infants than for unexposed infants. One hospital had a median charge of $5,500 for a drug-exposed infant vs. $1,400 for an unexposed infant. In its limited sample of hospitals, GAO also found an extremely wide range of costs for treatment of drug-exposed infants, from a low of $455 to a high of $65,325. In Florida, caring for a cohort of 17,500 cocaine-exposed babies born in 1987 - including the costs of maintaining nurseries, intensive care units, and special education and intervention programs - will have cost an estimated $700 million by the time the children enter kindergarten (New York Times, May 14, 1989).

Appendix G includes an in-depth cost analysis of the medical management of drug-exposed infants. Cost factors are evaluated with regard to: 1) evaluation and management services, 2) clinical procedures, and 3) pathology and laboratory tests.

Social Services

Drug-exposed infants and their families require a wide array of social services and impel new alliances among diverse agencies and providers. Drug abuse treatment and supportive services for the mother are immediate needs, as are followup and aftercare services for the newborn. A major goal of social services is to keep the family unit intact. Unfortunately, drug-exposed infants often end up being separated from their mothers, even if temporarily. Nationwide, the demand for foster care increased by 29 percent from 1986 to 1990; much of this increase is attributable to parental substance abuse. In 1990, New York City estimated that 57 percent of its children in foster care came from drug-abusing families.

Increase in foster care placements of children under 2 years of age has also been drastic; in Massachusetts, the number of children under 2 years admitted to foster care increased 73 percent between 1988 and 1990, while in Illinois, infants under 1 year of age admitted to foster care increased by 284 percent during 1985 through 1989 (GAO, 1990). An already overburdened system must gear itself to locating foster families that will accept drug-exposed children, ensure the quality of foster homes, and provide extensive support to foster families.

Legal Systems

During the last few years, attempts to institute criminal charges against women who give birth to drug-exposed infants have increased. In a similar vein, some judges have sentenced pregnant drug addicts charged with unrelated crimes to prison to protect fetuses from further drug exposure. In some jurisdictions, neglect proceedings are automatically instituted to obtain custody of infants with positive drug screens (Roberts, 1990).

Other pressing legal issues cloud the picture. For example: What are the obligations of physicians who treat substance-using pregnant women and mothers with respect to testing for and reporting drug exposure? How can they resolve the conflicting duties of reporting and maintaining patient confidentiality? How can lawyers shed light on the embedded issues: the concepts of fault, intent to harm, and present and future harm (Horowitz, 1991)?

Meeting the Challenge: Current Approaches

The foregoing discussion paints a grim picture of infant drug exposure. The picture is incomplete, however, without a view of the comprehensive service models that have been evolving during the last 2 decades to assist these infants and their families.

A key element of these models is a continuum of family-oriented services directed at numerous risk factors and available at a single site. Components of the model include: 1) prenatal care, labor and delivery management, neonatal care for high-risk infants, and postpartum and health and mental health care for mothers; 2) drug abuse treatment for mothers, combined with instruction and support in their parental role; 3) follow up and early intervention services for infants and toddlers; and 4) access to a wide array of support services, including income support and housing, food, employment, and legal assistance. Such models challenge the persistence and ingenuity of providers. "The multivariate systems approach . . . is a labor-intensive model. The model requires extensive knowledge of addiction; techniques for counseling, assessment, and intervention; an understanding of biological, physiological, medical, and sociological influences; and it expects an ability to mediate and to maneuver in rigid social systems and bureaucracies" (Finnegan, Hagan, and Kaltenbach, 1991).

Such models exist and flourish in many cities in the United States and are supported by various agencies of the Public Health Service, including the Center for Substance Abuse Treatment, the Center for Substance Abuse Prevention, the National Institute on Drug Abuse, and the Bureau of Maternal and Child Health of the Health Resources and Services Administration. Unfortunately, services provided by these model programs do not even begin to meet the enormous needs of drug-exposed infants and their families. Many more such comprehensive service systems need to be established throughout the United States.

Overview of Panel Recommendations and Guidelines

The recommendations and guidelines of the TIP consensus panel on Drug-Exposed Infants are derived from experiences in federally funded comprehensive models of care for drug-exposed infants and their families, and address many of the issues discussed earlier in this introduction.

• Medical Management - The panel provides detailed guidance on diagnosis of in utero drug exposure, assessment of the neonate, and effects on and treatment of infants affected by in utero exposure, including pharmacologic interventions for the opiate abstinence syndrome and cocaine neurotoxicity. Clinical assessment tools are recommended. Strategies for promoting positive mother- infant interaction immediately after birth are discussed, and a protocol for hospital discharge is provided.
• Followup and Aftercare of the Infant - A multirisk approach - one that focuses on environmental factors including drug exposure - is espoused for postpartum interventions. Early intervention services and desirable outcomes are described, and a time line chart for various interventions is specified. The panel recommends appropriate interventions for toddlers and preschoolers, along with necessary training for child-oriented professionals.
• Psychosocial Services - Key components of psychosocial services for families of drug-exposed infants are noted, paramount among which is drug abuse treatment for the mother. Strategies for keeping families intact are discussed. Recommendations are made regarding referral and followup for infants referred to child protective services.
• Ethical and Legal Issues - Fundamental ethical principles governing approaches to the treatment of drug-exposed infants and their mothers are discussed. The panel explores legal issues in assessment of mothers and infants for drug use and exposure to drugs. Guidelines in complying with reporting laws and laws governing the confidentiality of patient information are offered. Finally, elements of essential training in legal and ethical issues are noted.
• Quality Assurance - Guidelines are presented for some key aspects of quality assurance of service provided to AOD-using and -abusing women and drug-exposed infants.