Like all siblings, the six Simmons girls are unique in almost every way. Adopted in early childhood by Betty Simmons of Baltimore and her late husband Gregory, they have their individual interests, temperaments and strengths. But they also share much in common, in particular some serious cognitive, and possibly behavioral, issues that may be the result of prenatal alcohol exposure. The most serious effect of such exposure is a condition called Fetal Alcohol Syndrome (FAS), one of the leading known causes of intellectual disabilities and birth defects.
Fetal Alcohol Syndrome and its related conditions have been found to cause a spectrum of cognitive defects that depress children's intellectual potential and alter their ability to achieve developmental milestones as expected. Researchers at Kennedy Krieger and Marcus Institutes are probing the extent to which prenatal exposure to alcohol is tied to behavioral and emotional problems. Existing research suggests, however, that a biological mother's use of alcohol is more damaging to a developing fetus than her use of other substances, even cocaine, heroin and tobacco. It's also very common. "According to a University of Washington study, in this country, on average, one child in every 100 will be affected by alcohol exposure," says Kennedy Krieger's Dr. Paula Lockhart. "That's across the board, in every racial, ethnic and socio-economic group."
When a pregnant woman drinks, alcohol enters her bloodstream and can then enter the fetus's blood supply through the placenta. No studies have determined what degree of alcohol consumption triggers effects in children, although Lockhart and many other experts preach abstinence during pregnancy. In addition to the cognitive symptoms already discussed, children are diagnosed with FAS if they have dysmorphic facial features, specifically a flattened philtrum, thin upper lip, and short eye openings, reduced height and weight, and head circumference falling below the tenth percentile for their age. "The midline facial defects may also be accompanied by other physical problems such as cardiac complications, myopia, and malformation of the eustachian tubes that can lead to frequent ear infections," says Dr. Claire Coles, who directs the Fetal Alcohol Syndrome clinic at the Marcus Institute in Atlanta.
Diagnosing a child with FAS is relatively easy for trained personnel, but not all children who are exposed to alcohol in utero display all the symptoms required for an FAS diagnosis. The less severe manifestations of prenatal exposure, sometimes grouped under the title of fetal alcohol spectrum disorders, or FASD, can be much more difficult to identify. Often affected children aren't living with their biological parents, but rather with foster or adoptive parents who may not be aware of the child's prenatal exposure to alcohol. These children's behavioral and cognitive problems are often first interpreted as attention deficit hyperactivity disorder, which may be treated very differently.
The Simmons girls belong to this larger group of individuals. Their symptoms are further complicated by complex mental health issues. Outgoing Robin, 12, is a strong reader, but her math skills are weak and she struggles with fine motor tasks like handwriting; her half sister, 15-year-old Andrea, although very bright, demonstrates aggressive behavior so severe that it is difficult for her to be managed safely at home. Ebony, also 15, with natural artistic skills, has mild intellectual disabilities and a psychotic illness. Her half sister, 16-year-old Bria, has mild intellectual disabilities, hyperactivity and severe anxiety. Eight-year-old Catherine has average intelligence, but is hyperactive and struggles to control repetitive behaviors. Her half sister Alicia, 10, has mild intellectual disabilities, an articulation disorder, and severe depression.
Dr. Lockhart, a child psychiatrist, directs the Behavior Teratology (BT) clinic within Kennedy Krieger's outpatient psychiatry department and has treated the Simmons girls for almost a decade. She and the other BT clinic staffers, Drs. Cynthia Keysor, Ana Maciel, Maria Rodowski, and Renee Clermont, a nurse therapist, meet weekly to discuss evaluations and treatment strategies, provide mental health assessments, psychotherapy and pharmacotherapy and receive consultation from other departments within the Institute. The clinic receives referrals from clinicians within Kennedy Krieger who also treat alcohol-affected patients, and from individual referrals from the community. When FAS is suspected, Kennedy Krieger's Dr. Gerald Raymond, a pediatric neurologist and dysmorphologist, evaluates the presence of structural changes of the face and body that may be associated with a teratogen such as alcohol.
Both the Kennedy Krieger and Marcus Institute FAS programs have received significant grant support aimed at furthering understanding and treatment of this complex disorder. "Until now, almost all of the public grants focusing on fetal alcohol exposure have funded awareness campaigns and treatment programs designed to prevent pregnant women from drinking. There has been little done once the children are born," says Dr. Coles, a psychologist. "That's valuable, but the fact is that some women's drinking problems are so severe that no amount of education can make them stop, and children will continue to be born with these symptoms."
Properly treating a child with FAS requires treating the whole family. "Twenty percent of our patients still live with their biological mothers," says Dr. Coles. "Most of them are in recovery by the time they come to us, and we need to support that recovery. If the mother is still addicted, we still need to help her understand her child's disorder as best she can." Dr. Lockhart agrees. "With our patients, we probably spend half of our time managing environmental issues having to do with family, school, and community functioning," she says. "For example, the biological parents whose children we treat are still struggling with their own mental health and recovery, while trying to do the best they can to understand what's happened to their children. Adoptive parents unfortunately often don't find out until years later that the disability they and their child cope with is related to prenatal alcohol exposure. Perhaps the most complicated situations are the ones where the child is in foster or kinship care. In these instances, the child is not only coping with their disability, but also with having a biological parent intermittently present in their lives who may still be struggling with addiction and possibly mental illness."
Because FAS is so frequently undiagnosed by primary physicians as well as psychiatrists, Drs. Coles and Lockhart have found that many children with the disorder have been prescribed high doses of often-inappropriate medications in a futile attempt to treat disorders the children don't actually have. The side effects associated with all of these ineffective drugs can complicate the child's symptoms even more. Unfortunately, there have been few studies of the effects of common behavioral medications on the behavior of alcohol-affected children so there are no guidelines for physicians at this time. At the same time, the behavioral effects of postnatal abuse, neglect and ineffective parenting are often confused with the effects of prenatal alcohol exposure.
Even after a child with prenatal alcohol exposure has been accurately diagnosed; prescribing appropriate medications can be complex. In situations such as this, when there may be associated physical and central nervous system problems, medication must be carefully chosen not to make a physical or neurological condition worse. Although care must be taken in prescribing medication to alcohol exposed individuals, anecdotally, psychotropic medications used to treat mental illness have been found effective for the emotional and behavioral symptoms found in some of these patients - whether the symptoms are related to alcohol exposure or not. Hopefully, in the future, clinical research will clarify the role of medication management in these patients.
Drs. Coles and Lockhart place a great deal of emphasis on helping patients' families learn how to respond to the disorder. "We do a lot to educate all of the parents on how to discipline and generally manage their child, so that expectations are appropriate for the child's developmental and cognitive level. We also help to have the parents understand that a decrease in "expressed emotion" is needed when a child is out-of-control or behaving in a dysfunctional manner, so as not to lead to the child becoming more stimulated and less in control," Dr. Lockhart says.
At the Marcus Institute's Fetal Alcohol Syndrome clinic, patients from birth to age 21 receive a comprehensive evaluation of the existence and extent of their prenatal exposure. This evaluation includes screenings by medical geneticists, pediatric or developmental psychologists, social workers and educational specialists. The team meets afterward to summarize their diagnostic findings and plan treatments. The clinic provides ongoing psychotherapy for many patients and conducts parent workshops to help families continue to develop their understanding of the disorder. "Depending on our patients' needs, we also recommend regular follow-up visits and help in identifying community services for which the family may be eligible," Dr. Coles says.
In addition to the direct interventions available at both locations, both clinics are engaged in research projects intended to improve treatment for children with FAS. In 2001, Dr. Coles' Fetal Alcohol Syndrome Clinic became one of five sites chosen by the Centers for Disease Control and Prevention to evaluate effects of specialized treatments designed to help children with fetal alcohol syndrome overcome their skill deficiencies. The Marcus site is focusing on behavior regulation and math skills while other sites focus on parent/child interaction and social skills development.
In 2001, Dr. Lockhart received a five-year Career Development Award from the National Institute of Alcohol Abuse and Alcoholism (NIAAA) to fund a study to determine how the attention problems found in children with FAS are similar to or different from attention problems found in children with ADHD. The findings of this study will form the basis of future research studies designed to measure treatment protocols for attention difficulties in children with fetal exposure to alcohol. The children involved in the study will undergo a semi-structured psychiatric interview, IQ testing, structural MRI, dysmorphology evaluation, computerized behavioral tasks and attention and executive functioning measures. Drs. Martha Denckla and Stewart Mostofsky of Kennedy Krieger's Developmental Cognitive Neurology Department are serving with Dr. Coles as Dr. Lockhart's primary mentors for this project. Dr. Coles has already done extensive research on the connection between FAS and attention difficulties.
The Marcus Institute's CDC-funded study calls for the recruitment of 100 children between the ages of 3 and 9. All of the children's caregivers will receive information necessary to understand their child's disability and tips for working with the school system to meet the child's educational needs. After these information sessions, the group is divided into two groups, only one of which receives ongoing parent training and customized math tutoring sessions targeting each child's unique areas of difficulty.
The Marcus Institute clinic provides an ideal setting for such a project, given its years of clinical experience in treating children with fetal alcohol syndrome. "We see 120 new families each year," says Dr. Coles. "And we have hundreds of existing families who come back in for referrals to psychiatrists and help in navigating the school system. We wouldn't be able to do the research without the clinical experience, but in turn, what we learn from the research informs our treatment of our kids."
Fetal alcohol syndrome has been underdiagnosed and misunderstood for so long that many individuals with it have ended up achieving fairly grim outcomes dependence on parents and public assistance, trouble with the law and similar problems. But as experts such as Drs. Coles and Lockhart devise increasingly improved ways of understanding the disorder's basis and the best treatments for it, opportunities for children with FAS improve. "The many children and adolescents that we've treated over the years have demonstrated to our clinical team that, in order to maximize outcomes, these individuals require ongoing, intensive mental health care that evolves as the individual and family evolves," says Dr. Lockhart. "With informed treatment and education of parents, guardians, teachers and community support providers, our children's chances for a brighter future may become a reality. Prevention, however, is ultimately the key."