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Home > Protecting Children in Substance-Abusing Families > Protecting Children in Substance-Abusing Families : Children of Chemically Involved Parents: Special Risks

 

 

Protecting Children in Substance-Abusing Families
User Manual Series (1994)
Author(s):  U.S. Department of Health and Human Services
Kropenske, Howard, Breitenbach, Dembo, et al.
Year Published:  1994



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Children of Chemically Involved Parents: Special Risks

CASE VIGNETTE: Although born full term, Lisa's baby boy, Timmy, remained in the hospital for over a week following birth because of his small size and feeding difficulties. He also was very irritable, difficult to soothe, and slept only for brief periods of time. At 5 months of age, Timmy continued to demonstrate bizarre fisting and stiffness of his hands. Because of ineffectual sucking, each feeding took over 45 minutes. Timmy was also easily upset but enjoyed being held. By 1 year of age, the stiffness and irritability had resolved, and Timmy's weight gain and development appeared to be well within the normal range. However, he continued to have difficulty sleeping through the night, and this was very stressful for his caregiver. Eventually it became clear that this little boy's cognitive and language behaviors were average, and by age 4 Timmy's preschool teacher reported that he was well-behaved, although concerns remained regarding his short attention span and the difficult time he had sitting still and following directions. During his first 2 years in elementary school, Timmy's short attention span interfered with his ability to concentrate, and he needed extra help from a research teacher to keep up with reading and arithmetic skills. School staff continue to watch Timmy for potential learning difficulties related to short attention span and hyperactivity.

This chapter describes the health and development of children exposed prenatally to alcohol and/or other drugs. The neurodevelopmental consequences of such exposure, particularly in the long term, are not all known. Research is currently being conducted to help us better understand these consequences. In discussing the common health concerns and developmental patterns that have been observed in this population, it is important for professionals to consider the following issues:

  • Polysubstance abuse. Most substance abusers use multiple drugs or drugs, alcohol, and nicotine in combination. In some cases, this polysubstance abuse may occur without the user's knowledge because it is common practice among street dealers to substitute drugs and to "cut" the purity of illicit substances with a variety of adulterants. Furthermore, although parents may report use of only alcohol, nicotine, or a single drug, such statements regarding drug and alcohol use during pregnancy are often unreliable, in part because of parental inaccuracy in recalling their actual drinking or drug use during periods of intoxication.

  • Range of outcomes. Any alcohol or other drug use during pregnancy potentially can affect fetal health and well-being. There are no known "safe" levels of prenatal drug, alcohol, or nicotine use. However, among infants who have been prenatally exposed to these substances, a wide range of health and developmental patterns have been observed. The medical and developmental complications associated with prenatal substance abuse will be discussed later in this chapter. Because there is a broad continuum of effects of prenatal drug, alcohol, or nicotine exposure (varying from severe to mild to no apparent effect), outcomes for individual children cannot be predicted.

  • Multiple etiologies. There clearly are adverse immediate and long-term effects of alcohol and other abuse during pregnancy, but there are also a number of other maternal health, nutritional, and lifestyle factors that greatly impact fetal growth and development. These factors also significantly contribute to the increased risk of developmental difficulties throughout childhood. Substance-abusing mothers often have compromised health, no matter what their socioeconomic status. Smoking, poor nutrition due to excessive dieting or inappropriate selection of food, poverty, or other lifestyle influences may complicate the effects of substances on the fetus.

  • Environmental impact. Children in substance-abusing families are at double jeopardy–they are both biologically and environmentally at risk. Moreover, the interplay between biological and environmental factors is extremely significant because biological problems can be exacerbated or mitigated by environmental influences. For example, a home environment that is responsive and nurturing can help reduce the negative developmental effects of low birth weight. On the other hand, an environment that does not provide adequate nurturing can increase the risk of negative developmental outcomes associated with low birth weight.

  • Limitations of research. Obtaining accurate self-reports about alcohol or other use is difficult and limits epidemiological and clinical research on causality. Most documentation about the serious side effects of prenatal alcohol and other drug exposure in infants and children has been noted in cases of alcoholic and drug-dependent mothers. Little is known regarding the effects of experimental or sporadic drug and alcohol use during pregnancy, in part because the identification of occasional users is much more difficult. Even less is known about the effects of paternal substance abuse. Furthermore, the standardized measures currently used to evaluate infants and young children of chemically involved parents are not sufficiently sensitive to subtle behavioral and cognitive deficits.

Keeping in mind the above issues and the fact that many important questions regarding the effects of maternal drug and alcohol abuse remain unanswered, the following sections will discuss the common neonatal and infant complications that have been described in some substance-exposed infants and young children as well as the developmental patterns that have been observed in this high-risk population. It is important to note that the descriptions contained in this chapter are intended to provide general information and followup guidelines. Concerns about individual children need to be discussed with the child's pediatrician, a child psychiatrist, other health care providers, family members, and any other professionals who are involved in providing care.

Neonatal and Infant Complications

There are a number of pediatric medical complications associated with prenatal substance abuse. These include neurological disturbances, prematurity, infectious diseases, Fetal Alcohol Syndrome (FAS), Sudden Infant Death Syndrome (SIDS), failure to thrive (FTT), intrauterine growth retardation (IUGR), and central nervous system (CNS) disorders.

Neurological Symptoms

Various neurological disturbances have been noted in newborns who have been exposed prenatally to drugs and alcohol. The following symptoms are most commonly observed:

  • irritability,

  • tremors or jitteriness,

  • prolonged or high-pitched crying,

  • increased or decreased muscle tone,

  • alternating periods of lethargy and irritability,

  • frantic sucking of hands,

  • uncoordinated sucking,

  • seizures,

  • fever,

  • sweating,

  • diarrhea,

  • excessive vomiting,

  • unusual or rapid (nystagmus) eye movements, and

  • disturbances in sleep patterns.

Infants born to mothers who abuse stimulants such as cocaine and methamphetamine may appear lethargic and unresponsive during the first few days following birth. When such infants are alert, however, they are often easily overstimulated and may progress from being asleep to a state of loud crying within seconds. As they become older, infants who were lethargic during the immediate postnatal period often become more irritable and difficult to console. However, these behaviors often are self-limiting and may subside by age 2.

The majority of infants born to mothers who have used narcotics such as heroin or methadone during pregnancy become symptomatic within 72 hours after birth. Although irritability and tremulousness often decline over the first month of life, some narcotic-exposed infants remain symptomatic for many months. Initially, infants may have red, dry skin on their knees, elbows, and cheeks as a result of their excessive body movements. Frequently, these infants have diarrhea and episodes of vomiting that interfere with weight gain. These newborns may require medication in order to calm them, help them suck and swallow more successfully, and also limit their bouts of diarrhea.

Medication for symptomatic infants is warranted when the infant's vomiting or diarrhea causes weight loss or dehydration. The Neonatal Narcotic Abstinence Scale is used to determine which infants require medication.6 Commonly used medications include paregoric and phenobarbital. Infants who have seizure activity require immediate treatment with anticonvulsants.

  • Ideally, all infants receiving drug therapy for symptoms of prenatal substance exposure should be weaned from these medications before hospital discharge. Those children who are on medications at time of discharge need to be carefully monitored. Overdoses can occur, and it is important to be certain that parents or other caregivers are administering medications properly. If an infant is on phenobarbital, the amount of medication circulating in the blood stream (the blood level) needs to be checked at regular intervals.

  • Infants with seizure disorders may require ongoing medication and followup with a pediatric neurologist.

Prematurity

Prematurity is defined as birth at less than 37 weeks of gestational age. Usually, premature infants weigh less than 2,500 grams. However, low birth weight also may occur in full-term infants of substance-abusing women. Prematurity in and of itself poses a distinct set of biological risks that can result in chronic illness for the infant and interfere with normal growth and development. In general, preterm delivery occurs in less than 10 percent of the newborn population. However, the risk of prematurity among substance-exposed infants is higher.

The problems commonly observed in preterm infants, including those who were prenatally exposed to drugs, are intracranial hemorrhages, bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), respiratory distress syndrome (RDS), and disorders that interfere with normal feeding ability. Infants who display these conditions are often termed "medically fragile."

Intracranial Hemorrhages

Intracranial hemorrhages refer to bleeding into the brain tissue. Such an occurrence is known to be a risk factor for later physical and/or intellectual problems. Cerebral palsy, or impaired motor movements, for instance, can occur when there has been an intracranial bleed or an interference with the blood flow to specific areas of the brain.

Because a hemorrhage can obstruct the normal flow of cerebral spinal fluid that circulates around the nervous system, some preterm infants who experience intracranial bleeding require treatment for hydrocephalus, an accumulation of serous fluid within the cranium that can interfere with physical and/or intellectual development. Treatment for hydrocephalus involves the surgical insertion of a ventricular peritoneal (VP) shunt, or tube, that provides drainage of the fluid from the brain into the abdominal cavity.

  • Infants with hydrocephalus require followup by a neurosurgical team to ensure that the shunt does not obstruct or become infected. In addition, parents need to know how to identify signs of infection and obstruction.

  • For infants with developmental delays or motor problems, evaluations by developmental disabilities specialists are needed to ensure that appropriate early intervention is made available.

Bronchopulmonary Dysplasia (BPD)

One of the most well-recognized complications of prematurity is BPD, a condition that affects lung tissue and interferes with normal breathing functions. Following their discharge from the neonatal intensive care unit (NICU), children with this condition may continue to require oxygen, have complex medication regimens, and need special home-monitoring of their heart and respiratory rates. Children with BPD are at increased risk for poor weight gain, serious respiratory tract infections, multiple hospitalizations, and delayed development.

  • The health care team needs to ensure that parents/caregivers are able to use equipment and administer medications properly, as well as detect signs of respiratory infection.

  • Caregivers for children who have periods of apnea (prolonged cessation of breathing) and who require apnea monitors also must be able to perform cardiopulmonary resuscitation.

Retinopathy of Prematurity (ROP)

Preterm infants are at risk for developing a disease involving the vessels in the eye called ROP. Multiple causes of this disorder have been suggested; however, no specific cause has been identified to date, and no fully adequate treatment modalities have been developed. All preterm infants should receive a thorough eye evaluation by an ophthalmologist before they are discharged from the nursery. In some cases, ROP improves over time, but in other cases, children may be left with varying degrees of a visual handicap.

  • Those babies who have symptoms of ROP, noted by changes in the vessels of the retina, must have followup eye examinations.

  • Those children who do develop a visual handicap need to be involved in early intervention programs specifically aimed at assisting them to learn about their environment through tactile and auditory channels as well as through their remaining visual abilities.

Diseases That Interfere With Normal Feeding Ability

There are several medical problems that may interfere with an infant's ability to take all of its daily nutrition by mouth. Infants with certain neurologic conditions may not be able to suck and swallow normally. Infants with BPD may expend too many calories working to breathe or may become short of breath while feeding. In such cases, supplemental gavage/forced feeding (formula given through a small tube that passes through the mouth or nose into the stomach) may be required. In more severe cases, a gastrostomy tube (feeding tube) is surgically placed into the stomach to augment caloric intake or to bypass oral feeding when an infant is unable to suck or swallow effectively.

Another, less common medical complication that may interfere with feeding is necrotizing enterocolitis (NEC). The cause of this disease is not known; however, it sometimes results in damage to the gastrointestinal tract making it impossible for the child's intestines to absorb food. In such cases, some type of total parenteral nutrition (TPN), for example, intravenous (IV) feeding, may be required.

  • Before hospital discharge, caregivers of infants requiring gavage feeding, gastrostomy tubes, or intravenous lines must be carefully trained and supervised in providing the specialized care their children need. Caregivers must receive detailed instruction regarding how to care for equipment and how to administer the feeding solutions through the catheters (tubes). In-home followup and close contact with the health care team are essential.

  • Because their feedings may be so disruptive and technical, infants who require gastrostomy tubes or TPN may not receive the social stimulation that usually accompanies feeding (i.e., holding, rocking, and talking). Therefore, it is important to help parents find alternative ways to provide these experiences in order to minimize adverse developmental effects.

Infectious Diseases

Infants with prenatal substance exposure are frequently exposed to infectious diseases of the mother, either prenatally or at the time of delivery. A mother who has multiple sexual partners, a history of prostitution, or a history of injection drug use is at increased risk of acquiring a variety of infectious diseases that can be passed to the child. Because many infectious agents cross the placenta, infants born to infected mothers are at increased risk of acquiring their mothers' infections during pregnancy. The infectious diseases most commonly seen in infants of substance abusers with multiple sexual partners are gonorrhea, syphilis, herpes, chlamydia, hepatitis B, and human immunodeficiency virus (HIV) and/or acquired immunodeficiency syndrome (AIDS). Multidrug esistant tuberculosis (TB) is yet another infectious disease experienced by some infants.

Gonorrhea

Gonorrhea may be transmitted from the mother to the infant during a vaginal delivery. The most common neonatal manifestation of gonorrhea is an infection of the eye (conjunctivitis) with a purulent discharge (pus) appearing 2 to 7 days after birth. As a preventive measure, it is standard medical practice to put silver nitrate or erythromycin in the eyes of all newborns at delivery. Untreated, gonorrhea of the eye can result in blindness. Conjunctivitis in any newborn must be evaluated.

Syphilis

Syphilis in newborns is acquired from an infected mother. Most often, newborns who have been exposed to syphilis prenatally are without physical symptoms. In such cases, a newborn's infection is discovered through a routine blood test at delivery. Congenital syphilis (syphilis that is acquired prenatally) must be treated with antibiotics or it can proceed to cause significant illness, affecting the CNS, bones, joints, and other organ systems. The long-term effects of congenital syphilis depend on the length of time the infant was infected before treatment.

  • Typically, antibiotic treatment for congenital syphilis is completed before the infant's discharge, with followup blood tests at 3, 6, and 12 months to ensure the adequacy of initial therapy.

  • If an infant's infection occurred shortly before birth, the blood test at delivery may be negative. Therefore, if maternal infection is suspected, many physicians currently recommend repeating the test for syphilis (VDRL) when the infant is 2 months of age.

Herpes

Congenital herpes infection occurs prenatally or by transfer from mother to fetus as the newborn passes through the vaginal canal and is exposed to the herpes virus. The mother may be completely without symptoms, or she may have vesicular (blisterlike) lesions on her genitals that contain the virus. Symptoms in infected infants range from a few herpes lesions on the skin to viral invasion of all organ systems, including the CNS. The effects can be quite serious and include severe mental and/or motor impairments, seizures, and/or visual disability. Infected infants are at increased risk for developmental problems.

Because initial symptoms may appear shortly after birth or as long as 1 month after delivery, careful followup for signs of blisterlike lesions or illness is recommended for all infants born to mothers known to have genital herpes infections.

Chlamydia

Chlamydia is a bacterial infection that may be transmitted from the mother to the infant during vaginal delivery. Generally, an infant's first symptom of infection with chlamydia is conjunctivitis that usually appears from a few days to a few weeks after birth. The eye often appears red and swollen with a watery discharge. If an infant infected with chlamydia is not treated, he/she may develop a pneumonia that generally is recognized at 1 to 4 months of age when the baby develops a chronic cough. Both chlamydia conjunctivitis and chlamydia pneumonia must be treated with oral antibiotics. Topical eye drops administered at birth do not prevent chlamydia infection. Because symptoms of chlamydia infection often do not appear until after hospital discharge, any infant who develops conjunctivitis, cough, or respiratory infection should be evaluated by his/her health care provider.

Hepatitis B

Hepatitis B is an infection of the liver that usually is transmitted in adults by sexual contact or sharing of contaminated drug needles. The hepatitis virus can be acquired by infants in utero or during the delivery process. Neonates who are at risk for hepatitis B infections include infants born to injection drug-using mothers, prostitutes, and mothers who have relationships with men who are at risk for hepatitis B infection. Untreated, infected infants may develop chronic liver disease. They also are at increased risk of developing liver cancer later in life.

  • Because of the increasing prevalence of this disease, many physicians recommend screening all substance-abusing mothers for hepatitis B infection prior to and at the time of delivery.

  • Infants whose mothers carry the hepatitis virus are treated with hepatitis B immune globulin (HBIG) and hepatitis B vaccine within the first day of life. Subsequently, hepatitis B vaccines are given at 1 and 6 months. A blood test is usually performed at 9 months to determine if an additional dose of the vaccine is needed. Caregivers need to coordinate this ongoing health care with a pediatrician.

Human Immunodeficiency Virus (HIV) Infection

Most newborns who have HIV infections contract them from their infected mothers. This virus, which causes AIDS, can be transmitted prenatally, at the time of delivery, or through breast milk. Infants born to mothers in the following groups are at increased risk for HIV infection:

  • women with evidence of HIV infection;

  • women who are injection drug users;

  • women who are prostitutes;

  • women with multiple sexual partners;

  • women who are sexual partners of bisexual men, men who are injection drug users, men with multiple sexual partners, or HIV-infected men; and

  • women who have lived in countries with high rates of heterosexual transmission of HIV.

Not all infants born to HIV-infected mothers will acquire the disease. The precise rate of infection is currently unknown. Those infants who test positive for HIV infection and subsequently develop physical signs of pediatric AIDS during the first year have a very poor prognosis. The long-term prognosis for infants who test positive for HIV infection but remain asymptomatic is unknown. The prognosis for infants who test negative despite their mothers' infection is also uncertain, because an infant who initially has a negative test may later show evidence of infection.

  • Testing for the HIV virus in all infants of mothers in high-risk groups has been recommended to provide early diagnosis and aggressive treatment of HIV-related infections as well as prevent viral transmission to caregivers.

  • Infants born to mothers who test positive for the HIV virus must have repeated periodic testing, even if their initial tests are negative.

  • All HIV-positive infants should be referred to a specialized health care team. A modified vaccination schedule is indicated for infants with the HIV virus, and specialized treatment is required for appropriate health care management.

  • Caregivers of HIV-positive infants will need special training and may require a range of supportive services.

Tuberculosis (TB)

TB is an infectious disease caused by tubercle bacilli. Infection may occur anywhere in the body, but the lung is the most common site. After the airborne tubercle bacilli are inhaled, they generally multiply in the lungs, sometimes reaching the bloodstream via the lymphatic system and passing to other areas of the body. TB may develop either immediately (most often the case in infants and adolescents) or after a period of latency. Symptoms may include fever, cough, night sweats, weight loss, and breathing difficulty. The most common methods of diagnosis include a history of exposure to someone diagnosed with TB, the Mantoux (PPD) skin test, chest x-ray, and sputum smear/culture. However, diagnosis in newborns and young infants can be difficult.

There has been a recent resurgence of TB in the United States, especially among children under 5 years of age. Some possible reasons for this increase may include a shift in the incidence of TB from the elderly population to the 25- to 44-year-old (i.e., child-bearing) population, the lack of screening programs for high-risk children (e.g., children in poverty, new immigrant children), lack of funds for public health investigation of possible carriers, and the coexistence of TB with HIV infection in some areas of the Nation.

Although it generally involves at least a 9-month course of medication, early treatment has a high success rate. Nevertheless, the extent of the disease and the recent emergence of drug-resistant TB strains have made it essential to consult an infectious disease expert whenever TB infection is suspected.

  • Research suggests that there is no racial predisposition to TB. However, the incidence of TB is especially high among impoverished populations with a high rate of substance abuse.

  • TB can be transmitted from mother to infant through breast feeding. A mother who is receiving treatment for TB should not breast feed because the medications are not contained in breast milk in sufficient quantities to destroy the TB organisms that are passed on to the child.

  • It is important that high-risk groups, including new immigrants and individuals living in poverty, receive an annual PPD test. Thus, professionals need to acquaint themselves with the prevalence of TB within their particular service areas and contact their local public health departments for assistance in treatment and followup protocols, if necessary.

Fetal Alcohol Syndrome (FAS)

Alcohol consumption during pregnancy may result in a pattern of birth defects known as FAS. The diagnosis of FAS is based on three factors: prenatal and postnatal growth retardation, including low birth weight and microcephaly (abnormally small head); CNS abnormalities, including intellectual impairment, developmental delays, behavior dysfunction, and neurological abnormalities; and abnormalities of the face. Children with a confirmed history of prenatal alcohol exposure, who display some of the symptoms associated with FAS but who do not meet all of the diagnostic criteria, are diagnosed with Fetal Alcohol Effect (FAE). As the child matures, problems with learning, attention, memory, and problem solving are common, along with incoordination, impulsiveness, and hyperactivity.

Facial characteristics associated with FAS include small eyes, short eye openings, epicanthic folds, flat upturned nose, indistinct philtrum (groove in the midline of the upper lip), thin upper lip, crossed eyes, droopy eyelids, and malformation of the external ear.

  • Careful monitoring of growth as well as screening for any additional physical problems that may accompany either FAS or FAE is required for all affected children so that appropriate services can be provided.

  • Involvement in an early intervention program designed for children with special needs is also recommended for children who exhibit developmental delays.

Sudden Infant Death Syndrome (SIDS)

Children who have been prenatally exposed to drugs may have an increased risk of dying from SIDS. SIDS, sometimes called "crib death," is defined as the sudden death of an infant under 1 year of age that remains unexplained after autopsy, investigation of the death scene, and review of the case history. In the United States, SIDS is the leading cause of death in infants between 1 and 12 months of age. SIDS may have multiple causes, and it is almost impossible to predict when it will occur. Children who die from SIDS commonly exhibit no other sign of illness immediately prior to their death.

  • Home apnea/cardiac monitoring is recommended for preterm infants who experience recurrent apnea and for full-term infants who present with severe acute life-threatening episodes (ALTEs), sometimes referred to as "near-miss SIDS."

  • The decision to institute home monitoring should be based on medical assessment and reached in collaboration with the caregiver. There is no guarantee that SIDS can be prevented, and it can occur in spite of appropriate monitor use.

  • Caregivers of children who require apnea monitors must be able to perform cardiopulmonary resuscitation (CPR).

Failure To Thrive (FTT)

FTT is a syndrome of disordered growth and development characterized by a marked deceleration in weight gain and a slowing in acquisition of developmental milestones. There are many reasons why an infant may not gain weight. Medical reasons resulting from biological causes include vomiting, excessive diarrhea, poor swallowing, cystic fibrosis, and congenital heart disease. Of course, infants also will fail to gain weight if they are given insufficient protein and calories. This may occur if the caregiver mixes formula improperly, does not feed frequently enough, or fails to respond to the infant's signals when he/she is hungry. FTT can also result from psychosocial deficits in the caregiver-infant relationship, such as failure to provide adequate physical nurturing in the form of contact comfort (holding, cuddling, or touching).

In infants who were prenatally exposed to drugs and alcohol, FTT may be due to both medical and environmental factors. A pattern of poor sucking, swallowing difficulties, and distractibility has been observed in many of these infants. In addition, children who live in dysfunctional, chemically involved families are at increased risk for parental neglect and for receiving inadequate nutrition on a consistent basis. Furthermore, some infants prenatally exposed to drugs are born very small for gestational age and, in spite of adequate caloric intake, may never attain average growth parameters.

Accurate diagnosis of FTT often entails hospitalization in order to determine the exact causes. In cases of environmental FTT, once adequate calories and/or appropriate nurturing care are offered, weight gain usually occurs immediately. Unfortunately, this simple medical treatment cannot be effective on a long-term basis unless a thorough evaluation is made to determine the reasons for the child's poor weight gain.

In cases of environmental FTT, an individualized, interdisciplinary treatment program should be developed to address the interrelated needs of both the parent and the child. Such a program may include any or all of the following: parent education; individual, conjoint, and/or family counseling; medical services; and substance abuse treatment. Close in-home monitoring also can be an important support for the family as well as an essential safeguard when the child remains within the parental home.

Intrauterine Growth Retardation (IUGR)

The term IUGR is used interchangeably with small for gestational age (SGA) to describe fetuses with suboptimal growth (generally with birth weight below the 3rd percentile for age).7 Causes for IUGR vary. It often is associated with congenital infections (that is, infections that are present during pregnancy and passed on to the fetus) such as rubella, cytomegalic virus (CMV), or HIV. Genetic abnormalities, such as those seen in rather rare chromosomal disorders (trisomy 13 and 18), also may result in IUGR. However, the most common causes of IUGR are related to conditions that result in reduced transport of nutrients from mother to fetus via the placenta during pregnancy. Hypertension (high blood pressure), for instance, frequently causes constriction of the blood vessels, including those that lead from the placenta to the fetus, thus restricting the transport of nutrients that are important for growth. Although many individuals suffer from hypertension because of a genetic predisposition, obesity, and/or stress, drugs such as cocaine, methamphetamine, and PCP also may bring about this condition. Further, IUGR may be seen in cases of insufficient maternal caloric intake. Depending on the cause, interference with fetal growth may begin during the first trimester, or its onset can occur later, during the second or third trimester of pregnancy.

Central Nervous System (CNS) Disorders

A CNS disorder is any condition or malformation that affects the brain. These disorders may originate in utero, or they may be caused by postnatal factors. Prenatal CNS disorders include viral infections [e.g., HIV, rubella, CMV, or toxoplasmosis] or congenital malformations of the brain (e.g., hydrocephalus, microcephaly, or porencephalic cysts). During delivery, certain conditions, including severe perinatal asphyxia, in some cases may lead to CNS impairment that results in physical disabilities such as cerebral palsy or vision and hearing deficits. Postnatal events may also lead to CNS disorders. These include bacterial or viral infections (e.g., meningitis or encephalitis), tumors (malignant or benign), and intracranial bleeds (usually seen in preterm infants).

Specific to children who have been exposed prenatally to alcohol and/or other drugs, reports have shown an increased incidence of decreased brain growth in utero in newborns, in some cases leading to microcephaly. Some infants who were exposed to cocaine and methamphetamine have been reported to have experienced three separate CNS lesions prenatally–hemorrhage into the ventricles, areas of necrosis in the brain matter, and cavitary lesions.8 In a few cocaine-exposed newborns, there have been reports of infarctions, or severe constrictions of major blood vessels, that have resulted in damage to certain areas of the brain.9

A very important CNS condition that is seen in children under 2 years of age is inflicted trauma to the head, sometimes including skull fractures. In infants younger than 4 months of age, when children have only minimal head control, cases of Shaken Baby Syndrome are sometimes observed. This syndrome has been noted to occur when a caregiver is under stress, becomes frustrated with an irritable baby, and holds the infant by the shoulders or arms, shaking or forcibly slamming the child against a surface, such as a crib mattress. Only rarely are there obvious physical signs of abuse. However, resulting injuries may include intracranial bleeding, retinal hemorrhages, or occasional skull fractures, with long-term consequences that may include cerebral palsy, blindness, seizure disorders, or even death. 10 11

Medical Followup Recommendations

All newborns who have been prenatally exposed to alcohol or other drugs require careful medical followup. The preceding paragraphs have described the array of medical conditions that are not infrequently present in children who were prenatally substance-exposed and that require careful observation. Further, a parent's chemical abuse often can interfere with his/her ability to meet a child's basic needs. Therefore, prior to discharge, it is imperative that members of the health care team, the infant's parent/caregiver, and child welfare professionals actively communicate to clarify the infant's existing medical condition, followup needs, and required level of caregiving. It is the joint responsibility of the health care team and the staff of all involved community agencies [Child Protective Services (CPS) caseworkers, drug treatment counselors, attorneys, judges, and child advocates] to ensure that substance-affected children receive appropriate followup and coordinated care.

  • Arrangements should be made for the parent/caregiver to visit the hospital before the child's discharge to learn about the infant's special needs and to be instructed in any special caregiving skills.

  • A home visit by a public health nurse or other appropriate professional before the infant's discharge is important to assess the adequacy and safety of the home environment as well as the family's preparation for the child's arrival. Such visits also can help identify older siblings or other children within the home who are in need of medical care. Post discharge, in-home followup should occur within the first week after discharge, with followup visits scheduled according to family needs. In-home followup should be provided for all caregivers, including parents, relatives, and foster parents.

  • The infant's parent/caregiver should be provided with a written summary of the infant's diagnoses and medical complications after birth, treatments provided, and needed followup care. This is especially critical for infants who will not be receiving their medical followup with practitioners who are familiar with their histories (see Table 1).

  • Pediatric well-baby care should be provided more frequently than is customary. An initial appointment should be made with the child's pediatrician within 2 weeks after discharge. Subsequent well-baby appointments should be scheduled at 1, 2, 4, 6, 8, 10, and 12 months. This increased frequency is desirable in order to give parents/caregivers increased support and to provide needed anticipatory guidance. Frequent medical followup also enables better monitoring of a child's ongoing physical care.

  • Pediatric well-baby care is especially critical for medically fragile infants. In addition to subspecialty followup, such infants also require regular well-baby followup with a primary physician to ensure appropriate immunizations and preventive health care services.

  • Supportive followup services, including home visits, parenting education, and counseling are essential to maintain and enhance the parent-child relationship.

Often, ancillary supports are also required to ensure that needed followup services are provided. Such supports might include transportation, child care for other children in the family, assistance in coordinating multiple appointments with health care specialists to minimize the number of trips, or even assistance with filling out required forms. This type of coordination requires the collaboration of every member of the service team.

Developmental Concerns

Prenatally drug-exposed infants and young children are at increased risk for developmental problems. Regardless of their health status, all such children need to be evaluated from a developmental standpoint at least once during the first 6 months of life, again at 1 year, and at least every year thereafter until they are school age. Children with recognized developmental problems will need more frequent assessments.

Developmental screening in drug- and alcohol-exposed children is critical because early intervention and early identification of developmental problems are key to optimizing the children's social, language, cognitive, and motor development. As has been demonstrated in other high-risk groups of children (e.g., preterm children, children born small for gestational age, and children with diagnosed physical and/or mental disabilities), infants who experience responsive caregiving environments and young children who are in center-based programs generally show better developmental outcomes than children who do not have these experiences. Through home-, center-, and school-based programs, children affected by parental alcohol and/or other drug abuse can be exposed to enriched environments and given opportunities that will foster their developmental potential.

Developmental Assessment

To evaluate the developmental progress and needs of infants and young children, specialists (e.g., pediatricians, occupational therapists, and psychologists) use standardized tests such as the Bayley Scales of Infant Development, the Gesell Developmental Schedules, and the Denver Developmental Screening Test. These structured measures evaluate the personal/social, language, adaptive/cognitive, and motor skills of the infant and young child. Findings from the evaluation of these four developmental areas provide information about the child's current strengths and problem areas and may help predict later moderate to severe mental retardation. However, these measures are not sensitive enough to identify a specific child who may have a short attention span, learning disability, hyperactivity, or other developmental problems later in life.

Beginning at about 3 years of age, standardized intelligence quotient (IQ) tests such as the Wechsler or the McCarthy scales are used for evaluating a child's cognitive abilities. Measures such as the Achenbach Child Behavior Checklist are useful for assessing social and behavioral problems in older children. Although they may be helpful in providing "warning signs" (e.g., delayed language development, fine motor incoordination, hyperactivity, short attention span) for future learning difficulties, these measures indicate risk status only and cannot be used to predict specific learning problems. Only during the school-aged years can more precise measures be used to detect existing learning disabilities (e.g., attention deficit disorder, dyslexia, etc.).

Developmental Patterns of Prenatally Drug-Exposed Children

Infants and young children exposed prenatally to drugs or alcohol display a wide array of developmental patterns that range from normal to deviant. It bears repeating that these patterns are the result of complex interactions among biologic and environmental factors. It is important to keep in mind that children of substance abusers, whether they reside in poor, middle-class, or wealthy households, are at high-risk for environmental deprivation, a critical factor in determining a child's long-term emotional, social, and intellectual development. We can do little to alter biological influences, but we can often mitigate biological risks by promoting healthy environments.

Infancy (0 to 15 Months)

Unpredictable sleeping patterns. Most infants develop predictable sleeping patterns by 4 to 6 months of age. Although newborns generally have short periods of sleep throughout the 24-hour cycle, the typical infant is able to sustain a 6- to 7-hour nighttime sleep sometime between 4 and 6 months of age. Some infants who have been prenatally exposed to drugs or alcohol continue to demonstrate sleeping patterns more typical of a newborn throughout the first year.

  • Medications have not proven useful in helping these infants organize sleep/wake states.

  • Respite care is often extremely important in these situations because the infants' erratic sleeping schedules, coupled with their increased irritability, can be exhausting for even the most experienced caregiver.

Feeding difficulties. By the time they are 2 weeks old, most infants have established a somewhat regular pattern of feeding and are able to suck effectively enough to have regained their birth weight. However, infants prenatally exposed to drugs or alcohol may have a variety of feeding difficulties.

Feeding problems commonly reported by caregivers of prenatally drug and alcohol-exposed infants include prolonged feeding time due to uncoordinated and ineffective sucking movements or lethargy, infant distractibility during feeding, frequent spitting up of formula, and increased need to suck (hyperphagia). The following are some suggestions that professionals may find useful in helping parents or other caregivers to deal with these concerns:

  • The parent can swaddle and hold the baby during feeding. Propped bottles should not be used.

  • The parent should use bottles for feeding liquids only and use spoons for solid foods.

  • For a baby who spits up a lot, the parent should burp the infant more frequently (some babies need to be burped after each ounce).

  • For an irritable baby, the parent can feed the infant in a quiet place away from other children and distractions and avoid sudden movements.

  • For an unusually sleepy baby, the parent should allow more time for feeding and provide extra encouragement to keep the baby awake such as massaging the back or rubbing the soles of the feet while talking softly.

  • For a baby who has an intense need to suck even after the infant's stomach is full, the parent can offer a pacifier to avoid overfeeding.

Irritability. A range of temperaments is seen in all neonates. Some infants tend to be easygoing and are readily soothed when fussy, but others tend to be more irritable and are harder to calm. Caring for these infants is more difficult. Infants who have been prenatally exposed to drugs and alcohol often display such irritability. They can be easily overstimulated and, once aroused, have great difficulty calming themselves. For such infants, professionals can offer the following recommendations to parents/caregivers:

  • Swaddle the baby, with hands exposed.

  • Walk and hold the baby close to the body, using a front carrier (the combination of swaddling, body contact, and gentle motion puts many fussy babies to sleep).

  • Bathe the baby in warm water, followed by a gentle massage.

  • Place the infant face down on the parent's/caregiver's abdomen and gently massage his/her back.

  • Offer a pacifier.

  • Speak softly.

  • Gently rock the baby in a windup cradle or swing, ensuring that his/her head is well supported.

  • Play soft music in a quiet room, and avoid bright lights, jostling, and loud noises.

  • Support the baby's bottom with one hand and his/her head with other hand, hold the baby away from the parent's/caregiver's body in an upright position, and rock the baby gently in an "up and down" motion.

Atypical Social Interactions. Social interactions begin at birth. When awake, the newborn infant will respond by turning toward a voice and will visually connect and look at the caregiver. These are brief behaviors, but they are especially rewarding to parents as they begin the attachment process. By 4 months of age, the typical infant is cooing in response to social exchanges, makes direct eye contact, and has a social smile for persons in the immediate environment. At 6 months of age, this highly social child becomes more discriminating and smiles less at strangers.

Infants who have been prenatally exposed to drugs and/or alcohol may have a number of atypical social responses, including indirect gaze, gaze aversion, and less marked stranger discrimination during the second half of the first year. Professionals should:

  • Provide explanations to help parents/caregivers to keep from personalizing the infants' interactive behaviors.

  • Remind parents/caregivers that the children's social responses and interactions will improve if they are given appropriate time and opportunities. When gaze aversion occurs, it may indicate a need for decreased stimulation.

  • Encourage consistency of parents/caregivers to support the children's early attachment needs.

Delayed language development. Language development during early infancy involves cooing, smiling, chuckling, squealing, and crying. Infants who have had prenatal exposure to drugs and alcohol may demonstrate fewer vocalizations and less babbling. Language development can be promoted if professionals encourage parents/caregivers to:

  • Talk with the infant during bathing, feeding, and changing times.

  • Respond to the infant's attempts to vocalize, reinforcing responses with eye contact and animated facial expressions.

Increased muscle tone and poor fine motor development. Motor development follows a similar pattern in all healthy infants. However, there is some variation in the age at which individual milestones are normally achieved. Young infants exposed prenatally to heroin and methadone generally reach gross motor milestones at appropriate ages. However, these infants frequently exhibit increased muscle tone (stiffness). In contrast, young infants exposed to stimulants such as cocaine may have decreased muscle tone and variable motor development, though most demonstrate attainment of milestones at an appropriate age. Furthermore, among older infants who were prenatally substance-exposed, there may be problems with fine motor coordination, unsteadiness in the movement of extremities, and mild problems with balance. For such babies, professionals should recommend that parents/caregivers:

  • Encourage activities that provide safe opportunities for rolling over, crawling, and pulling to a standing position.

  • Provide opportunities to practice reaching for and grasping small, lightweight toys. Encourage feeding with finger foods, such as cereal or crackers.

Toddlerhood (15 to 36 Months)

Atypical Social Interactions. Toddlers see themselves as the center of the universe, around which all activities focus. The pronoun "mine" epitomizes this particular age. The building of trust in one's own social relationships is an important behavior learned during this period.

An important factor that determines later successful social interaction relates to the kinds of early experiences children have with their parents/caregivers. If a child has a secure attachment relationship with his/her primary caregiver, there is increased likelihood that the child will later have effective social interactions. Because children who are raised in chaotic home situations are at high-risk for later problems with appropriate social behaviors, one of the important tasks professionals face is to ensure that children have opportunities to acquire the trust needed for later healthy interpersonal relationships.

Toddlers who have had prenatal drug or alcohol exposure, or who live in environments in which there is unpredictability in caregiving may demonstrate atypical social behaviors, including overfriendliness, withdrawal, and impulsive behaviors. For toddlers who display such behaviors, professionals can encourage the parent/caregiver to:

  • Provide consistent and nurturing caregiving within the home setting.

  • Enroll the toddler in an early intervention program that can provide daily substitute nurturing and consistency when the parents/caregivers are not readily available.

Delayed language development. Toddlers have a growing vocabulary but understand (receptive language) more words than they are capable of speaking (expressive language). Toddlers who were prenatally substance-exposed or who live in substance-abusing households tend to have decreased vocalizations and immature pronunciation of single words. Professionals can recommend several specific intervention strategies, including the following:

  • Parents/caregivers can use body language and direct eye contact to reinforce verbal directions.

  • Parents/caregivers can use objects and pictures to augment the meaning of spoken words and read simple picture books with the child.

Minimal play strategies. Play is central to the young child's early cognitive development. A toddler's pretend play with dolls, baby bottles, cooking utensils, and trucks becomes more elaborate. Children's interactions with toys and other objects within their environment become more purposeful and organized, and their activities are sequenced, with a beginning, middle, and end. For instance, most toddlers will hold a baby doll, feed it, and then put it to bed. In testing situations, some substance-affected children appear less able to independently organize a meaningful sequence of play with such common toys. Intervention techniques for children that professionals can recommend include the following:

  • Parents/caregivers can discuss daily events and activities in a way that highlights cause-and-effect relationships, sequences of events (i.e., emphasizing the beginning, middle, and end), and social relationships and characteristics (e.g., the differences between relationships with family members and with strangers). This can be done simply while looking at picture books, during meals, at bath time, on trips to the grocery store or park, and after watching a children's television program together.

  • Parents/caregivers can model play with toys in a meaningful sequence with use of words and body language so that the child can imitate and, eventually, generalize this behavior.

Preschool Years (3 to 5 Years)

Preschoolers are more socially independent and are able to learn to share and take turns. Their language skills are more sophisticated, and their attention spans are sufficient to allow them to learn within a group setting that provides less individualized attention.

Many children who live in chaotic environments and/or who have suffered prenatal substance exposure show increased activity levels, short attention spans, impulsivity (e.g., they lose control easily), mood swings, and problems with moving from one activity to another.

Some substance-affected preschoolers also may continue to demonstrate difficulties in the auditory processing of spoken words as well as visual processing of material presented to them in the form of pictures. Furthermore, some demonstrate "sporadic mastery of tasks," in which the skills they demonstrate one day are absent another. Concern about the social development of substance-affected preschoolers also has led to ongoing research into the patterns of attachment and social interaction within this high-risk population of children.

Professionals working with drug- and alcohol-affected preschoolers have developed the following recommendations for addressing the special problems of this population within a classroom setting: 12

  • For the child who is easily overstimulated, it is helpful for professionals to limit the number adults and children in the classroom and regulate the number and types of toys available at any given time.

  • For the child who has difficulty with social interactions, professionals should provide consistent and explicit expectations of his/her behavior and use verbal cues and physical contact to direct or redirect the child's activity and model behavior that emphasizes taking turns.

  • For the child who has difficulty with task mastery, professionals can verbalize the steps in task performance, ask the child to verbally repeat these steps, and model approaches to completing the task.

  • For the child who has difficulty with transitions (changing from one activity to another), professionals can provide a predictable daily routine that includes a regular pattern of play, rest, and meals. They also should provide consistent praise for accomplishments and prepare the child for transitions by discussing planned changes in activities in advance.

  • For the child who displays behavioral problems, professionals can encourage dramatic play, allow time for him/her to express emotions, and assist the child in developing alternative ways of expressing feelings.

School and Teenage Years

Little is known about the long-term biological effects of prenatal exposure to drugs; longitudinal prospective studies are needed to build a solid base of knowledge. However, children who exhibit language delays, distractibility, and/or problems with fine motor coordination during the preschool period are at increased risk for learning problems during their school and teenage years. For children who were prenatally exposed to alcohol, there is growing information about the cognitive development of school-aged children with FAS. By the time such children reach elementary school age, many demonstrate cognitive skills that fall within the mentally retarded range. Other less severely affected children display attention deficit disorder and specific learning problems related to difficulties with visual and auditory processing.

In the absence of research data describing the long-term effects of prenatal substance exposure, there are still a number of ways in which professionals can provide services for children and adolescents from substance-abusing families. Sometimes, older children may come to professionals' attention because of the birth of a younger substance-exposed sibling in the family. Other children may demonstrate problem behaviors in school (e.g., depression, learning difficulties, repeated absences) that can alert professionals to a possible problem with alcohol and/or other drug abuse within the family. Additionally, children may come to the attention of professionals through the child welfare system. The children also may begin experimenting with or abusing drugs and/or alcohol themselves. Further, law enforcement professionals also may be in a position to identify family substance abuse problems when adolescents engage in acting-out behaviors.

Whatever behavioral symptoms a child may demonstrate (and whatever their cause), as he/she passes from preschool into elementary school and beyond, available testing measures become increasingly more sensitive in identifying learning strengths as well as problems. A team of teachers, psychologists, speech and language therapists, hearing and vision specialists, nurses, and other professionals can be called in to assess difficulties with learning that may be related to short attention span, speech and language problems, impulsivity, difficulties with short-term memory, auditory and visual processing, etc. Based on such an evaluation, school personnel can more readily develop effective educational programs to help the child or adolescent compensate for identified problems.

However, more often than not, this educational intervention alone is not sufficient to support ongoing success in learning for children who live in substance-involved households. Unlike many children who have learning difficulties but who have grown up in stable family environments, the majority of drug-affected children have experienced environmental instability that may have included multiple placements, child abuse and neglect, inconsistent parenting (possibly including extended parental absences), domestic violence, and other stressors related to alcohol and/or other drug abuse. Thus, social workers, other mental health professionals, and members of the clergy may also need to provide services to help identify, treat, and prevent mental health disorders in such children.

For children who experience problems in school and who also are growing up in dysfunctional homes, the cumulative effects of both academic failure and environmental instability may greatly impair their functioning in a variety of other areas. Poor peer social relationships and low self-esteem place such children and adolescents at high-risk for depression, suicide, substance abuse, teenage pregnancy, and school dropout. In terms of primary prevention efforts, professionals can:

  • Advocate for needed specialized educational services within the school system, tutoring for academic underachievement, and assessment and intervention for neuropsychological problems.

  • Encourage participation in school or community-based, teen-oriented support groups, such as AlAteen or AlAnon if alcohol abuse is a concern.

  • Encourage a stable relationship with an adult role model through participation in programs such as Big Brothers or Big Sisters.

  • Explore recreational and work experiences whereby the older child or adolescent will have opportunities to experience success.

  • Refer parents to support groups that provide education and guidance for dealing with difficult childhood and adolescent behaviors.

  • Provide individual and family therapy.

Summary

The point at which a substance-affected child becomes visible to professionals usually depends on the child's age, and it is important to remember that the child welfare system may not always be the primary identifier. A prenatally substance-exposed newborn is most likely to be identified within the health care system on the basis of maternal or infant signs and symptoms, as is a toddler, who may have problems with infections, FTT, etc. A preschooler, on the other hand, may be more visible within programs such as Head Start or early intervention programs for special-needs children, in which the child or his/her parents may demonstrate behaviors that are suggestive of a substance abuse problem within the family. Teachers and other educational professionals may identify school-aged children from alcohol- and/or other drug-abusing families on the basis of child or parental behavior or the content of the children's conversations with staff and peers. Adolescents from substance-abusing families also may demonstrate problem behaviors at school, or within the community, thus coming to the attention of law enforcement professionals.

At any one of these points of visibility, professionals can garner their resources and provide intervention. An interdisciplinary approach that encompasses the children's problems as well as those of other family members is most likely to be effective in helping families with problems related to alcohol and/or other drug abuse. Further, it is important to remember that child development is an ongoing process. Just as early intervention has been shown to have a positive impact, comprehensive, coordinated efforts can be helpful at whatever stage they are begun.



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