When parents bring their young children to the International Adoption Clinic at Yale, they arrive with questions, often by the dozen. When will my child begin walking? Is his eating normal? Is this behavior normal for her age? Are his size and weight within range? Some of the questions are typical of any routine visit to the pediatrician; others could only be posed by families that have adopted from overseas. Underlying all of them is one fundamental concern: Will my child be normal and healthy?
If having a baby opens an ordinary Pandora’s box of questions and concerns, then adopting a child from another country opens an even larger one. In addition to the normal adjustments of parenthood, parents who adopt from abroad must take into account the social and cultural heritage of their child’s homeland, along with any medical issues that are specific to that country. For pediatricians, these questions have arisen more and more frequently. In 1992 the U.S. Department of State counted 6,536 international adoptions; by 1997 the number had more than doubled, to 13,620. According to the Joint Council on International Children’s Services, 16,396 children were adopted from abroad by U.S. parents in 1999. This small but growing population of young patients brings with it some unfamiliar medical challenges, ranging from iodine deficiency to incomplete vaccination records and obsolete screening tests.
Since its formation in 1998, the Yale clinic has offered new resources to pediatricians and adoptive families throughout Connecticut and parts of New York. Led by Margaret K. Hostetter, M.D., professor of pediatrics, the Yale International Adoption Clinic combines up-to-date tracking of diseases that are common outside the United States with a thorough understanding of how a child’s previous living situation and care may affect his or her physical, mental and emotional development.
“Development is not like a clock that just slows down in difficult circumstances. In some cases there has to be an unlearning that takes place before the child can go forward,” says Hostetter’s colleague Carol Cohen Weitzman, M.D., an assistant professor of pediatrics who specializes in developmental and behavioral issues.
Parents who come to this clinic, like any parents of young children, have at least as many questions about their children’s behavior as about their general health. Often, however, they raise issues that rarely crop up in general pediatrics in this country. For example, if the child hoards food in his room or hides it throughout the house (a habit often seen in older children coming from orphanages), that may actually be a reasonable but misplaced response to a scarcity of food sometime in his past. As the child learns to trust his parents to provide enough food every day, the hoarding may gradually stop. “It’s a matter of teasing out what’s normal growth and development from what has to do with the fact that the child has come from adverse circumstances,” says Betsy Groth, A.P.R.N., a nurse practitioner in the clinic.
“A parent may ask, ‘My two-year-old is saying “no” all the time. Does it have anything to do with her upbringing in China?’ ” says Groth. “I tell the parent, ‘Well, no, it’s because she’s a two-year-old.’ But if someone asks, ‘Do you think it’s normal that a three-year-old wouldn’t try to feed himself at all?’ I would say, ‘That isn’t normal, but it may have been appropriate in an orphanage where the children were always fed by the staff and not encouraged to feed themselves because that would have been too slow and messy.’ ”
Standards of Care
Based on the second floor of Yale-New Haven Children’s Hospital, the Yale International Adoption Clinic practices pediatrics at a pace rarely seen since the advent of managed care. Three or four appointments make for a full morning, and the routine allows for plenty of discussion between clinicians and families. Clinic director Hostetter is thoroughly familiar with the requirements of this specialized medical field-in fact she is one of the founders of the field, having worked with Dana Johnson, M.D., Ph.D., to establish the country’s first international adoption clinic, at the University of Minnesota, in 1986.
She and Johnson, together with several colleagues, published a 1989 paper titled “International Adoption: An Introduction for Physicians” and a later paper on unexpected medical diagnoses that emerged when internationally adopted children received their first medical evaluations in the United States. In 1992, when the surge of adoptions of Romanian children was at its height, Hostetter, Johnson and others published a case series of 65 Romanian orphans who had been brought to the United States for adoption in the previous year. They found high rates of hepatitis B, intestinal parasites and developmental retardation, leading them to the sad conclusion that Romanian adoptees at that time were “an extraordinarily high-risk pediatric group as a consequence of government-sanctioned child neglect and abuse.” They also developed a list of seven essential screening tests, which the American Academy of Pediatrics endorsed in 1991 as the standard of care for adoptees.
Assessing the Risk
Two years ago, with the Minnesota clinic well established as a center of both treatment and consultation for internationally adopted children, Hostetter was recruited to launch a similar clinic at the School of Medicine. Here, she and Michael Cappello, M.D., associate professor of pediatrics (infectious diseases) and of epidemiology, carry out a careful physical exam of each child who comes to the clinic, while Weitzman evaluates the children for possible developmental problems and Groth handles the medical history and general information intake.
The clinic currently sees patients one morning each week, for a total of about 10 to 12 children per month. Hostetter also leads a collaborative group of seven basic investigators and their laboratory staffs at the Yale Child Health Research Center and heads up the Department of Pediatrics immunology section. She also serves on the National Advisory Child Health and Human Development Council, the principal advisory body of the National Institute of Child Health and Human Development.
Together with her colleagues at the Yale clinic, Hostetter continues to investigate issues that have proved central to international adoption. Says Weitzman, “We’d really like to find out who are the children having difficulties and which factors tend to be associated with these difficulties.” To that end, she and Hostetter have designed a small study to follow a group of internationally adopted children at six-month intervals far into the future. Seeking to identify good predictors of risk for developmental problems, the study will collect any available details of the child’s life before adoption and assess the child’s development, his level of social and emotional organization, and his relationship with his adoptive family. It will also assess physical growth, language development, behavior and issues of adjustment in the family.
If this preliminary project goes well, Hostetter and Weitzman plan to follow it with a larger one that would combine the efforts of six other major international-adoption clinics to study some 500 children all over the country. “Again, the idea would be to try to pinpoint, by statistical analysis, some of the factors that seem to predict developmental problems,” says Hostetter. “Should an orphanage stay of more than two years be a red flag? Are males more at risk for certain problems than females? Are the children of one country more at risk than those of another? We’re particularly interested in factors that can vary within one country of origin—for instance, if we were to find that, of all the children coming from Romania, the only ones with normal development are those from foster homes, this could have important implications for Romania’s policies on the care of orphans and also for people who are considering adopting from Romania.”
A Specialized Routine
Even though a typical appointment at the Yale International Adoption Clinic includes a standard pediatric exam, the focus is always on the specialized medical issues that go along with international adoption. Cappello, who shares the disease-screening procedure with Hostetter, sees himself and his colleagues as consultants, offering a new resource to the many primary-care physicians in the area. “We feel very strongly that our role should not be to supplant the community physicians—we want to supplement them instead,” he says.
For each young patient, the file will hold any medical records, however scant, that have accompanied the child from his native country; information about the birth mother that may hold medical significance (e.g., age, prenatal care received, number of previous pregnancies, any indications of substance abuse); and a full history of any recent symptoms. The Yale physicians give the child a thorough physical exam, checking for conditions that are common all over the world among people who have lived in institutions: lice, scabies, rickets and infectious diseases. And they look very carefully for signs of fetal alcohol syndrome— “a particularly difficult diagnosis to make,” says Cappello, “because it’s a syndrome with a wide range of severity rather than a disease [that can be diagnosed] with a simple yes-or-no test.”
The exam concludes with screening tests to detect ailments ranging from hepatitis B and C to tuberculosis, HIV and excessive lead levels. “For the most part, the countries we see children from are doing tests to the best of their ability,” Hostetter says, but sometimes that ability does not match current American standards. For example, tests for hepatitis B, if improperly performed, can give a false-negative result. Hostetter estimates that this happens in 6 to 10 percent of cases. “It’s a tough test to do because it has a number of steps and the result requires a special calculation in order to read it correctly,” she explains. To be safe, therefore, the Yale clinic tests again for hepatitis B. Likewise, children coming from Russia often show a record of having been tested for syphilis, but Hostetter prefers to test them again because the standard Russian method, the Wasserman test, which dates back to 1906, has a false-negative rate of about 5 percent. Newer tests (RPR and VDRL) are more reliable.
Intake information and medical history are handled by Groth, who says, “My session with an international adoptive family is an adaptation of what I would do during any well-child visit. I am always concerned with what the parents’ questions are. In this clinic I concentrate a little more on eating, digestion and nutrition.”
In A Gray Zone
The focus of Weitzman’s exam is on the child’s development, adjustment and emotional well-being. She says, “From my own observation I note whether the child is very clingy or is having difficulty letting anyone touch him, and whether he is able to seek out physical comfort or soothing when distressed. And I look at the early attachment relationship between the child and the parents. Does the child preferentially look to the parents, then to me? Do parents and child appear comfortable with each other? In other words, is this relationship taking a healthy turn?”
Weitzman’s questions point toward an important principle of international-adoption medicine: These children do not fit the pattern of American babies to begin with, and each individual can only grow into that pattern at his or her own pace. “You can’t use normative standards—not at first,” Weitzman emphasizes. She goes on, “Of course, this leaves you in a gray zone. When is it okay to say, ‘This child needs a little more time (to experiment with walking and running, to be willing to sleep in a room by himself, to start speaking English, to understand that this is his permanent family),’ and when should we recommend counseling or early intervention?”
Such a recommendation from the clinic can be an important guide for adoptive families in getting their child the help he or she needs. It is also a fairly common matter since, as Hostetter, Johnson and several colleagues found in a 1997 study of children adopted from Eastern Europe and the former Soviet Union, a child’s growth and development are delayed by one month for every three to five months he or she lived in an orphanage. Thus, a child brought home from an orphanage abroad at 12 months may seem more like a 9-month-old American baby, and a child adopted from an orphanage at age two may look, act, and think more like an American 18-month-old. Nevertheless, some parents struggle with the idea that their child may need special attention. “A lot of families want to believe that that part of the child’s life is all gone once they get her home,” says Weitzman. Of all the families who come to the clinic, she sees about one-fourth for follow-up care. She says, “I try to help these families understand what they may be facing—and also to give them a break, to let them realize that with all their love and care there may still be phases where their child needs additional services to help her catch up or to deal with the effects of early trauma or deprivation.”
Jerri Jenista, M.D., a longtime colleague of Hostetter now on the faculty at the University of Michigan, takes a similar realistic stance. “We would not expect to adopt a child in the United States without any issues,” she says, “so why should we expect a child from another country to come without any issues?” The most important step that adoptive parents can take to help their new child, even before they bring him home, is to gather plenty of information, both about the experience of adoption in general and about conditions that may have affected their child’s health in his country of origin. At Yale, the staff of the International Adoption Clinic likes to serve as a major resource for information. “I feel very strongly that good preparation beforehand is essential,” says Groth, herself the adoptive mother of a boy and a girl from Korea. If the family has not been well prepared by the time they arrive at the clinic with their child, she says, “It’s still possible to steer them toward sources of information—at least to advocacy groups or to support groups so they can meet with other adoptive parents and exchange their stories.”
Sharing experiences, information and helpful tips with other adoptive parents can certainly help with the day-to-day management of a family situation that can be as challenging as it is joyful. But there is one key piece of information that is best delivered by the international adoption clinic, even though adoptive parents may have known it for some time. In Weitzman’s words, “By far the most important intervention for these children is being placed with a family that loves them and pays attention to them.” YM