AIDS babies, crack babies: challenges to the law.

• Author: Bopp, Jr., James

On April 9, 1982, a child was born in Bloomington, Indiana, who would change the entire fabric of legal protections for disabled children. Infant Doe was born with tracheoesophageal fistula, a condition that prevents the normal taking of nourishment, but more important, the child also suffered from Down syndrome, a congenital disability usually producing some degree of mental retardation. (1) Due to their fears that the child would not have a minimally adequate quality of life, the parents decided not to consent to surgery, food, or water for the infant despite the recommendation of the pediatrician but in accordance with the recommendation of their obstetrician. (2) Efforts were made by the potential adoptive parents and the child's guardian ad litem to save the infant's life in the courts, but Infant Doe died six days after birth while attorneys were en route to file a petition for review by the United States Supreme Court. (3)

In response to Infant Doe's death, the Department of Health and Human Services issued regulations under the authority of section 504 of the Rehabilitation Act of 1973, (4) and Congress passed the Child Abuse Amendments of 1984.(5) The purpose of both actions was to provide increased legal protections for disabled children, like Infant Doe, whose lives are threatened by negative perceptions about their future quality of life. (6)

While these efforts did increase the legal protections for many children with disabilities, other disabled infants are still at risk. HIV-infected and crack-exposed infants both fall into the latter category of potentially endanged children. Due to the ever-increasing numbers of infants born with these afflications, the applications of the current laws need to be examined.

Infants with HIV infection have the same constitutional rights to due process and equal protection of the law as other newborn children with disabilities. (7) However, infants with HIV infection possess an extra handicap not suffered by most disabled infants. This extra handicap is the fear that society and health care professionals have concerning AIDS. (8) Thus, infants with HIV infection may fall prey to the problems of negative attitudes and misinformation more readily or frequently than other infants with disabilities, and the state may be even less inclined to intervene to protect the infant's interests.

Crack-exposed infants also have the same constitutional rights to due process and equal protection of the law. (9) Generally, crack-exposed infants do not possess the extra handicap of society's fear from which HIV-infected infants suffer. However, because women who use crack often prostitute themselves to obtain the drug (10) or are intravenous drug abusers, (11) crack-exposed infants sometimes have the misfortune of being HIV-infected as well. Even if crack-exposed infants do not possess the additional disability of HIV infection, such infants may suffer from the extra burden of negative stereotypes that physicians might have concerning the quality of life and care that the infant's parents would be able to provide. Furthermore, as society is facing the problems associated with rapidly rising medical costs, crack-exposed infants, as a group, threaten to be an astronomical contribution to these rising costs. According to a recent study, the cost of hospital delivery, prenatal care, and foster care for only 8,974 of these infants through the age of five would be $500 million, and "[t]he additional cost of preparing these children for school could exceed $1.5 billion." (12)

This article will review the legal protections provided to disabled children by the current constitutional, federal, and state laws and the problems that occur in their application to HIV-infected and crack-exposed infants.

Perinatally Acquired HIV Infection

Epidemiology of Pediatric HIV Infection

The acquired immunodeficiency syndrome (AIDS) is caused by a retrovirus called human immunodeficiency virus (HIV), which was identified in 1983. (13) The terminology accorded to the virus and its various stages is confusing because the syndrome was initially described before its viral cause was know. (14) The term AIDS is sometimes incorrectly used generically to refer to HIV infection. The more appropriate term, HIV infection, covers a wide spectrum, which can range from a person who is infected but apparently healthy to a person who is critically ill. (15) AIDS is the most severe syndrome resulting from HIV infection. (16)

When one thinks about AIDS, a child or infant usually does not come to mind. AIDS in children under thirteen years represents less than 2% of the total number of cases of AIDS reported to the Centers for Disease Control. (17) However, the magnitude of the problem is likely to increase, and some authorities project that as many as ten to twenty thousand children with AIDS will be detected during the next several years. (18) The spread of this infectioninto the intravenous drug using population is the main cause of this anticipated increase in HIV disease in children. (19) While women with AIDS account for only 7% of all adult cases, 95% of these women are of childbearing age. (20)

Women can become infected by sharing contaminated needles or by having sex with an HIV-infected partner. (21) If these infected women become pregnant, they can transmit the virus to their children. (22) Presently, approximately 78% of HIV-infected children have acquired the infection perinatally. (23) Accordingly, HIV infection in children is now clustered in regions of the United States where intravenous drug abuse is most prevalent, particularly New York City, Newark, and Miami, (24) although the proportion of infected women and children from other areas is increasing. (25)

Transmission from Mother to Child

It remains unclear whether perinatal infection is acquired during gestation or whether it occurs during delivery. (26) This issue is important because a determination of whether to treat the fetus prior to or at the time of birth rests on when the infection was transmitted during pregnancy. (27) Supporting transmission early in gestation are the dysmorphic craniofacial features observed in some children, (28) the detection of HIV in a twenty-week-old fetus, (29) and the isolation of HIV from amniotic fluid. (30) However, it is possible that transmission occurs either during delivery or in association with maternal-fetal transfusion. (31) Postpartum transmission in association with breast-feeding can also occur although this appears to be rare. (32)

it should be noted that transmission from a seropositive mother to the fetus does not always occur. (33) Present estimates suggest that approximately 25-55% of such infants will be infected. (34) The factors that influence material-infant transmission are unknown. (35) In fact, "seropositive women who bear additional children after the birth of an HIV infected infant may give birth to an infected or uninfected child, with no predictable pattern." (36) Risk factors for maternal-infant transmission have not been defined, although it is thought that women in the advanced stages of disease and/or more severe immunosuppression may be more likely to transmit. (37) Other factors such as persistent viremia, the percentage of infected cells, presence of neutralizing antibody, continued exposure to the virus during pregnancy, environmental factors, and intrinsic host factors are to be considered. (38)

Diagnosis of HIV Infection/AIDS in Infants

"As in adults, the cornerstones of diagnosis of HIV infection in children are (1) suspicion of infection based on epidemiologic risk or clinical presentation and (2) confirmation (when possible) by serologic tests." (39) Another complicating feature of pediatric AIDS is the difficulty in diagnosing HIV infection in childdren who are less than fifteen months of age. (40) Diagnosis is hampered by the presence of passively acquired maternal antibody, the difficulty in performing viral culture, the lack of reliable tests for HIV-specific IgM (immunoglobulin M), and the presence of nonspecific signs and symptoms of HIV infection in infants. (41) However, the relatively new technique of polymerase chain reaction assists in the detection of small quantities of HIV DNA (deoxyribonucleic acid) and may provide a greater sensitivity in diagnosing the truly infected infant. (42) "Studies to evaluate the sensitivity and specificity of polymerase chain reaction as a diagnostic tool in high-risk infants are under way at a number of centers." (43)

HIV infection/AIDS in infants and children presents itself differently from the infection in adults. (44) Due to these differences, the Centers for Disease Control (CDC) have adopted different guidelines for the definition of HIV infection and a different classification system of the clinical expression of the disease for infants and children under thirteen years of age. (45) Children less than fifteen months of age who were possibly perinatally infected are considered to be definitely infected only if they have symptoms meeting the CDC case definition for AIDS, if they have HIV detected in blood or tissues, or if they have a repeatedly reactive ELISA (enzyme linked immunoabsorbent assay) with a positive confirmatory test result in addition to humoral and cellular immunodeficiency and symptoms. (46) "In older children [with perinatal infection] or in children infected by other routes, evidence of a positive result on an ELISa and on a confirmatory test such as the Western blot is enough to define HIV infection." (47)

The classification system for children has three classes: class P-0, underdetermined infection; class P-1, asymptomatic infection; and class P-2, symptomatic infection. (48) Patients in class P-0 are those who infection is still in an indeterminate state, such as the patient who has clinical findings of HIV infection or belongs to a high-risk group but who has not been tested or whose...