The Kids Are Not All Right

Adoptees from overseas often get inadequate medical care

Tuberculosis rarely invades the quiet farm communities of North Dakota. But in one town in 1998, the disease became epidemic. Public-health investigators moved quickly to confine the outbreak. Of 276 people tested, 56 had positive skin tests for tuberculosis; 118 received preventive treatment. The source? A 9-year-old from the Marshall Islands who infected household members and classmates.

Clearly, this boy should have been screened immediately after entering the U.S. But he wasn't: A skin test taken upon arrival was never read, letting his infection simmer dangerously for two years before his seriously ill legal guardian sought treatment.

The story should serve as a cautionary tale, says Dr. Laurie C. Miller of the New England Medical Center. She has appealed to doctors to school themselves about the medical issues related to the thousands of foreign adoptees brought to the U.S. each year. "A surprising number of internationally adopted children do not receive proper evaluation and follow-up," Miller wrote in the Nov. 11, 1999, issue of The New England Journal of Medicine.

But that might not continue for long. Miller and other pediatricians who specialize in adoption medicine have gone public by applying to the American Academy of Pediatrics board for recognition as a "section." Section status would enable the specialists to use the academy's name to educate their peers. There'll be even more attention in April, when the Annals of Pediatrics devotes an entire issue to adoption medicine.

In the past decade, 105,128 adoptive children from 86 countries have entered the U.S. The impoverished backgrounds of these kids--the bulk of whom come from China and Russia--can mean maladies American doctors rarely see.

Children from Chinese orphanages, for example, often suffer from rickets, a vitamin D deficiency. Their physical size (due to genetic factors) is so much smaller than U.S. norms that they require "China only" growth charts. Lead poisoning from continued reliance on leaded gasoline and coal is another problem, along with roundworms and Giardia. And because so many Chinese baby girls are abandoned, experts are often needed to determine their ages.

LOOKS DECEIVE. Russian children have China's problems--and more. These include malnutrition and exposure to TB, which is epidemic in Russia. Some also arrive with Russian diagnoses of puzzling conditions such as "perinatal encephalopathy," which Western medicine views as nonexistent.

Another dilemma for Russian children: Resemblance to their middle-class U.S. parents can catch doctors off guard. "If a family walks in with a child dressed up beautifully, pediatricians believe this child has the diseases an ordinary suburban child would have," says Dr. Dana E. Johnson of the University of Minnesota's International Adoption Study Center.

The consequence is that important problems are often missed. "There are kids who have been in this country three or four years and have never been checked for hepatitis B, hepatitis C," says Miller of the New England Medical Center. "We've had doctors forget to check for parasites, and the kids are loaded with them." Parents' stories confirm these points. "They hadn't a clue," Lynn Franco of Columbus, Ohio, says of the pediatricians who wouldn't accept that there was something seriously wrong with her underweight son from the Dominican Republic--until she marched in with his diaper holding a six-inch-long parasite. "I don't think I'll ever get that out of my mind," Franco says.

Others have similar stories. Kathleen Johnson of San Diego had to talk to three associates in her pediatrics practice to get her Russian daughter's scabies treated as something other than a skin rash. And Lou Klaric of Falls Church, Va., is still searching for a doctor to treat her son's high count for helicobacter pylori, the bacteria--widespread in Russia--that cause ulcers. Says Klaric: "They think we're `overwrought."'

On the other hand, there are success stories. Andrei Chevalier, a Romanian baby adopted at 21 months by Mary and Craig Chevalier of Londonderry, N.H., had rickets, TB exposure, and orphanage behaviors like head-banging and sensitivity to touch. The Chevaliers say their pediatrician consulted with Dr. Miller in Boston, and today, at 36 months, Andrei--though still in physical therapy and intensive speech therapy--"looks wonderful."

MAKING THE ADJUSTMENT. Physical illnesses are not the only problems adoptees face. The adoption community fairly crackles with disagreement about adoptees' emotional-behavioral problems and cognitive disabilities. These can be particularly acute among Eastern European children who have languished in orphanages. Experts believe the cause is neurologic damage, possibly from lack of stimulation during infancy. Prenatal environmental exposures and malnutrition also may figure in.

Science hasn't supplied definitive answers. But there is growing agreement that the oft-cited "reactive attachment disorder" (RAD)--failure to bond with a parent--that was believed to be rampant in orphanage children is actually rare. Instead, experts such as psychiatrist Charles H. Zeanah of Tulane University's School of Medicine, who edited The Handbook of Infant Mental Health, believe certain disturbing behaviors, such as purposeless rocking, are far less serious than RAD. These problems, he says, "get better over time."

The nation's leading dozen or so international adoption specialists are based at centers in Boston, New York, Ann Arbor, Mich., Minneapolis, Pittsburgh, Cincinnati, and Seattle. They have their own newsletters, private computer lists, and Web sites. Parents usually find the specialists through adoption organizations. Many such organizations advise that specialists review the children's medical records. Once the children arrive in the U.S., the specialists perform thorough screenings and communicate with the parents' pediatricians about follow-ups and referrals.

With the growing availability of such care, most international adoptees are thriving. "The kids are great, the outcomes fabulous, and the families happy," says Dr. Jane Aronson, an adoption specialist in Mineola, N.Y., who has seen 800 adoptees over seven years. "The kids are adjusting, making friends, or having the usual learning problems that 10% of the population can have," Aronson says. The effort to spread the word about adoptees' peculiar medical and psychological problems is starting to succeed. For parents, that means peace of mind. For their children, it means a far brighter future.

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