Ruth Brown was born two months early and suffered a series of heart attacks almost immediately. She survived but had hearing problems. She was later diagnosed with a congenital heart defect, a hole between the lower chambers of her heart.
She was always small for her age, with a small head and features. She was placed in foster care when she was 2.
She's not sure when the root of her problems was diagnosed, but she was 14 when her adoptive parents told her why she struggled with school subjects, particularly math. Why she had learning disabilities and trouble hanging onto what she did learn. Why things sometimes seemed to come much harder for her than for others.
Her birth mother drank when she was pregnant with Ruth, who has fetal alcohol syndrome. Still, say experts who know her, Ruth Brown of Springville is, at 30, a success story. She's married, articulate, involved, especially with her LDS faith.
"We don't have many success stories," says Julia Robertson, program manager for the Pregnancy Risk Line at the Utah Department of Health. "These innocent little people have a tough time in life." Because of alcohol damage sustained before birth, "they make bad decisions, they have a hard time in school, a hard time keeping friends and keeping a job. It affects not only them but their families, too."
It's all preventable: Women who are pregnant must not drink alcohol. And since at least one-third of Utah pregnancies are reportedly unplanned, women who might become pregnant should not drink.
Many of the children, like Ruth, are not raised by their parents but are adopted. Often, their new families know nothing about the mother's alcohol use. When she used alcohol and how much during pregnancy are among the factors that determine how severely it will affect the child. And those effects do not go away.
Dr. Susan Lewin sees a lot of families struggling with problems that have not been solved in traditional medical systems. Some of the children with FAS-related conditions don't have obvious facial features that can be characteristic, but standard interventions haven't solved their problems. Although FAS is not a genetic condition it is not inherited and cannot be "passed" on geneticists like Lewin are often the people who work most closely with those affected by fetal alcohol. They have long experience dealing with kids who have disabilities genetic anomalies sometimes have to be ruled out and "they've fallen through the cracks in other places," although developmental pediatricians are increasingly being consulted.
Lewin says diagnosis includes looking for common features, like the small head and stature, small eyes, smooth upper lip. Chromosome testing must rule out conditions that present in similar ways. Next comes neuropsychological testing. People with FAS often have normal IQ but significant variation in how they learn. Their judgment and executive function centers don't work well. They do not do well in large classrooms, but the reason for their behavior and inabilities may not be recognized. And the more mildly someone is affected by the alcohol damage, the "worse they are likely to do in life," says Lewin, because people expect more than they can deliver and want them to "shape up," as if their challenges were choices.
"You're the kid who gets caught, who hangs out with kids who are not so good, the one who goes to jail. But with structure, emotional support, calmer environments and working with the strengths each child has, they do much better."
Many of them do well when they're very small but "fall apart" at about fourth grade, when they have to be more abstract in their thinking. About then, children also start reading social cues a skill FAS kids lack.
Effects of fetal alcohol can include behavior and learning disabilities, hyperactivity, attention and memory problems, poor judgment and reasoning, poor coordination, brain damage, growth deficits, mental retardation and heart and kidney defects. An inordinate number of them end up in juvenile hall, prison or living on the street. Some become drug addicts "and don't do as well even as others who are addicted," Lewin says.But early diagnosis and intervention make a huge difference. "Parenting them is hard, but this is one area where it really does take a village to raise a kid," says Lewin.