Adoption Medicine: A New Specialty
More and more parents consult experienced adoption doctors to evaluate their referral or to follow-up after adoption.by David Tuller
Ann and Stanley Reese were thrilled last summer when they adopted two toddlers from Romania and brought them home to Rye, New York. But two days later, Ms. Reese noticed that Ileana was limping badly and took her to the emergency room. The doctors determined that she had broken her ankle in two places. Then they delivered the really bad news: she had an advanced case of osteoporosis, a bone-thinning condition that primarily affects older people. Unnerved, Ms. Reese called Dr. Jane Aronson, a New York City pediatrician who is an expert on the health problems of children adopted from abroad.
“Jane laughed and said, ‘It’s not osteoporosis. It’s rickets, but they’ve never seen a case of rickets in Rye,’” said Ms. Reese, who found out about Dr. Aronson through an adoption Web site. Rickets, a treatable bone ailment caused by malnutrition and a lack of vitamin D, is common in developing countries.
A decade ago, only two or three doctors in the United States had extensive experience with the medical problems of children born abroad and adopted into North American families. Today, more than a dozen physicians in the United States and Canada are considered specialists in the emerging field known as adoption medicine.
These doctors offer parents pre-adoption counseling and evaluation based on a child’s medical records, as well as post-adoption consultations. Often, the doctors provide the child’s primary care. The field attained greater visibility last year when a leading journal, Pediatric Annals, devoted an entire issue to adoption medicine.
Dr. Aronson became intrigued with the field during her pediatric training nine years ago, when she began to receive phone calls from worried adoptive parents. “They would say, ‘My kid has parasites, my kid has a positive TB test, and my pediatrician doesn’t know what to do,’” said Dr. Aronson, whose clinic is called International Pediatric Health Services. “It became clear to me that this was a big population that had nowhere to go for information.”
That population has increased since then. In the late 1980s, Americans adopted fewer than 10,000 children annually from abroad, many from Korea. Last year, the figure topped 20,000, with large numbers from China, Russia and other former Soviet bloc nations, India and Guatemala.
Much of what specialists in adoption medicine look for is mundane. They focus on infections and ailments like hepatitis B and C, tuberculosis, intestinal parasites, scabies, and lice. They look for signs of fetal alcohol syndrome, which can cause cognitive and emotional problems, and malnutrition, which can impair growth and motor skills. They run tests to determine whether a child’s record of vaccinations, if one is available, is accurate.
“A surprising number of internationally adopted children do not receive proper evaluation and follow-up,” Dr. Laurie Miller, a pediatrician in Boston, wrote in an editorial last year in The New England Journal of Medicine. Her editorial continued: “Some physicians make the mistake of accepting the results of screening tests performed in the child’s country of birth, even though the laboratories there may be unreliable or the child may have become infected after the testing was performed.” In parts of the United States where immigrants are uncommon, Dr. Miller added, physicians may be unaware of the need for screening tests.
Much of what adoption specialists do, said Dr. Jerri Ann Jenista, a pioneer in the field, is evaluate as thoroughly as possible the medical conditions of children that a family is thinking of adopting. Dr. Jenista, a pediatrician in Ann Arbor, Mich., as well as the adoptive mother of five children from India, said she had performed thousands of such pre-adoption consultations in the past few years. Wide variations in the amount and accuracy of records can complicate the task. “From Korea, we get extensive information, including how many doses of cough syrup they’ve been given,” said Dr. Jenista. “From Guatemala, we typically get a one-line statement saying the baby was seen, is healthy.” Some countries send videos of the children, which can offer a great deal of information about developmental status, she said.
In making her evaluations, Dr. Jenista said, she outlines what she perceives to be the child’s main health risks and explains what resources the parents may find useful. When she believes a child has major disabilities, she presents the situation frankly to the parents but stops short of advising them about whether to proceed.
Some problems are hard to foresee. Nancy and John Crotty, a couple from Rye, were excited when they adopted 5-month-old Anna from Hungary four years ago. But because her pre-adoption medical records gave her a relatively clean bill of health, they were completely unprepared when she repeatedly suffered from asthma attacks and other respiratory ailments, most likely from poor orphanage conditions. “We were in and out of hospitals,” Ms. Crotty said. “I took for granted that the medical record given to me was true, and I had no idea then that there were special doctors that took care of these children.” When the couple adopted another Hungarian child this year, they consulted with Dr. Aronson before and after bringing the boy home.
Specialists and parents say that most of the children’s medical problems are treatable, and even those with more serious developmental difficulties generally recover. Dr. Jennifer Ladage, director of the Foreign Adoption Clinic and Educational Services in St. Louis, estimated that 3 to 5 percent of foreign adoptees continued to have major long-term behavioral and emotional problems. For children adopted after the age of two, however, some studies indicate that as many as a third may have lasting problems.
Dr. Ladage became interested in the field in 1996, when she adopted a boy from China. Alex, her son, had an un- repaired cleft lip and palate, and at 14 months was not walking or even sitting up by himself. But within six months he had developed motor skills appropriate for his age, she said. He also recovered well from surgery to his lip and palate. “In most cases children catch up, and some show such rapid growth and developmental milestones that it’s pretty amazing,” she said. Now, Dr. Ladage added, she cannot imagine her life without Alex—and she is waiting eagerly for approval to return to China and adopt another child.
David Tuller reported on adoption medicine for the New York Times, from which this article is reprinted with permission.
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