Health : Special Cases : Clinic Focuses on the Unique Problems of Children Adopted From Abroad
Michael and Deloris O’Brien were ecstatic on that day in January, 1987, when they welcomed into their home their third child, an outwardly healthy 4-month-old girl from South Korea.
South Korean officials had assured them she was healthy, but as a precaution they took Jillian to the International Adoption Clinic, a new facility here that specializes in the medical problems of children adopted from abroad. Jillian was diagnosed as suffering from tuberculosis.
The O’Briens were astonished. They were also lucky.
Tuberculosis is so rare among American babies that a pediatrician in this country might well have missed it in a routine examination. Indeed, American babies are not usually tested for tuberculosis until they are 8 to 10 months old. But the International Adoption Clinic has learned that there is a big difference between what is routine for an American baby and one born in some other part of the world.
“I think we would have had a much sicker child and I’m not sure our pediatrician would have known what to look for,” Deloris O’Brien said.
It was another small triumph for a clinic believed to be the only one of its kind in the nation. Created to diagnose and treat the unique medical and psychological problems of foreign-born children, the Minneapolis facility is meeting a burgeoning need. More than 10,000 children arrive in the United States annually for adoption--many of them with medical and psychological problems that can baffle or elude American health professionals.
“We’ve got pediatricians who say: ‘This kid looks great. We’ll treat him just like an American kid,’ and we’ve got pediatricians who freak out because they think these kids are starving orphans,” said Dr. Dana Johnson, director of the clinic. “The truth usually lies somewhere in between.”
The clinic opened in June, 1986. But the idea had been growing for at least two years, ever since Johnson, a neonatologist, worked with high-risk infants in a Calcutta nursery run by the International Mission of Hope, an agency that places Indian children for adoption. (Johnson, in fact, became so “hooked,” by the children he saw there that he and his wife later adopted a baby from that agency, their third child, a son Gabriel, now 3.)
After Johnson returned to the United States, officials from the International Mission of Hope began to call him periodically for medical advice related to their babies. Then other adoption agencies started to call, followed by prospective adoptive parents.
“By this time I was getting calls from all over the country,” Johnson said. “I was getting a lot of questions I had no answers to. And, looking in the medical literature, there weren’t a lot of resources. I decided there seemed to be a need.”
His instincts were right. Of the first 52 children screened by the clinic, “we made an unsuspected medical diagnosis in two out of every three,” said Dr. Margaret Hostetter, the clinic’s infectious-diseases specialist. These were children who did not have obvious medical symptoms, she said, yet “two out of every three had something that needed attention.”
Among the unexpected discoveries: hepatitis B, tuberculosis, intestinal parasites and cytomegalovirus, which occasionally can cause a mononucleosis-like syndrome and can also result in birth defects if a pregnant woman is exposed to infected urine. They also saw cases of rickets, or malformed bones, resulting from a Vitamin D deficiency.
Equally surprising, Hostetter found that “33 of them had already been seen by pediatricians in this country.”
In most of these cases, Hostetter said, critical screening tests that would have picked up the problems had not been performed--apparently because they were not problems that typically afflict American children.
Need to Alert Doctors
“There is a crying need to alert American physicians,” Hostetter said. “These children need a very special approach. It’s not the same approach you give to the little white kids from the suburbs.”
The clinic is part of the pediatrics division of the University of Minnesota Hospital, from which it receives its major funding. In addition to clinic director Johnson, and clinic coordinator Sandra Iverson--a pediatric nurse practitioner--and Hostetter, the staff includes a psychologist, an occupational therapist and specialists in nutrition, ophthalmology and cardiology.
The clinic screens children in person--most of them from Minnesota families--and consults over the telephone across the nation with any parent or physician who has a special problem or question. Additionally, Johnson speaks before physicians groups and writes numerous papers about the medical needs of these children.
“Education of physicians may be the most important thing they do,” said Susan Freivalds, executive director of OURS Inc., a Minneapolis-based national adoptive family support organization that works closely with the clinic.
“A lot of parents get the strangest advice from their pediatricians when they adopt a child with a special problem. Sometimes they hear: ‘Can you trade this one in for another?’ We tell parents to ask what their advice would be if this were a biological child. Many physicians don’t understand that these families bond with those children even before they arrive--from the moment they receive their pictures.”
Clinic personnel also take the time to educate families about rare and sometimes unfamiliar ailments. In the case of the O’Briens, for example, Hostetter talked at length with members of their extended family who were haunted by nightmarish visions.
“My grandmother had died of TB and my father, his brother and his sister all had to be put in isolation,” Deloris O’Brien said. “I had problems with my family, with them thinking that this baby was going to give TB to everyone. Dr. Hostetter calmed them all down.”
The clinic recommends several basic tests, including screening for Hepatitis B; tuberculosis (the clinic performs what is known as a “PPD” or “Mantou,” a far more sensitive tuberculosis test than the routine “four prong” performed by most American physicians); cytomegalovirus; intestinal parasites; and an examination for possible vision and hearing problems.
Clinic personnel are also trained to recognize and deal with behavior problems that are not typical of American children.
“There is quite a bit of food hoarding with older kids who have spent time in the streets or in deprived homes,” Johnson said. “They get fixated on food. They steal food, or hide it under the bed. They think: ‘I have to eat as much as I can because there won’t be any tomorrow.’ ”
Iverson added: “Sometimes, it can be more than food. It may be another child’s toys, or something else. But the reason for this is completely different from that of the American child who begins to steal. The most important advice we give to the parents is: ‘This is normal for this kind of child. It will resolve in time.’ ”
Precocious sexual activity in girls is another problem, Johnson said, usually the result of “what had been forced upon them in the country where they came from.
“They learn that this is the way you get things. It’s obviously a rather rude awakening for a family to see a child behave that way.”
Another problem raised by older adopted children is figuring out their correct age--many are small for their chronological age and don’t have a birth date. Some clues can be obtained--through a “bone age” X-ray, a dental exam and a head circumference measurement--but, as Johnson said, “you have to put a lot of things together.”
One girl from India was the size of an 8-year-old, but tests indicated that she was closer to 10. She, in fact, said she was 10--and acted like a 10-year-old, despite her small size. “People wanted to put her in the third grade because of her size, but we figured she’d be pubescent in two years,” Johnson said. “Those sorts of sexual changes and feeling different from everyone else can undo a lot of progress.”
Growth and development problems are typical of those faced by the clinic.
Recently, Iverson received a telephone call from a worried mother in Maryland. Her 18-month-old daughter, adopted at the age of 3 months from India, had only gained 1 pound in the last six months and currently weighed less than 17 pounds. Her pediatrician had recommended tests to determine whether she was deficient in growth hormone.
At arrival, the child weighed less than 6 pounds, but had gained weight continuously on an upward curve. She had also grown steadily in height--although she was still several inches shorter than the average American child of that age.
Indian children are typically much smaller than their American counterparts. Iverson plotted the child on Indian growth charts. The next day, she called back with reassuring news. “Her weight is falling off a little, but she’s slightly under the 50th percentile for Indian children, which is perfectly acceptable,” she said.
Hostetter added: “The fact that this woman’s pediatrician was worried was a heartening sign. We have to deal with more pediatricians who don’t pursue problems. Far more often parents have to fight upstream and are ignored by their pediatricians.”
Or worse, misadvised by them. One mother, for example, brought her new son--also adopted from India--to the clinic after her pediatrician declared he was retarded. He had reached that determination because the child--who was 5 months old--could not yet roll over or sit while supported.
A premature baby, he had arrived here extremely malnourished. Clinic officials observed that he had excellent “fine” motor skills--equivalent to those of a 1-year-old. After examining him, they concluded that his delayed development was the result of malnutrition.
“The woman’s pediatrician had told her not to give him baby food until he could sit up,” Hostetter said. “Yet what this child needed was calories. They could have easily placed him in an infant seat to feed him.”
Kathryn Dole, the clinic’s occupational therapist, emphasized how critical it was that these children “not be labeled immediately--we have to allow them to get into this culture and assimilate before we can make any determinations. If they are labeled too quickly, bonding and family relations can suffer. With this particular child, I remember, his grandfather wouldn’t have anything to do with him when he thought he was retarded.”
Another youngster came to the clinic after she failed her preschool screening. She was a 4-year-old girl from South Korea who had been here six months. School officials claimed “she couldn’t concentrate.”
“We noticed she had a big bump on the right side of her head,” Hostetter said. “The mother had been told she had fallen out of her crib.”
As it turned out, the bones on one side of the child’s head had fused, forcing her brain to grow the only way it could--in the opposite direction. That was the bump. The growth had also put pressure on the nerves--and the child was blind in one eye and deaf in one ear.
“When we watched her and asked her to do things--like put on her shoes, or her coat--she did just fine,” Hostetter said. “This was not a child who had an attention deficit or who was unwilling to cooperate.”
Sometimes, Dole said, differences in cultural standards and expectations between the United States and other countries can result in delayed development--which can easily be corrected with time.
“In (South) Korea, for example, these kids are not pushed to develop because they are carried all the time, or allowed to lie down,” Dole said. “Very often they arrive with flat, bald spots on the back of their heads, from lying down all the time. They come here at 6 months and can’t sit supported, or roll over, or play with their feet. Usually we tell the parents to put them on the floor on their stomachs, and let them push up, and give them an opportunity to start moving around by themselves.”
While it is important to screen immediately for physical problems, clinic officials said, it is equally important to wait at least six months before having a child intelligence-tested. A child crawling around on an orphanage floor playing with dust balls will not likely know right away how to stack blocks.
“If a child does badly on intelligence testing early after arrival, that colors the rest of the results,” Hostetter said.
The clinic has screened more than 100 children in person, and has become involved in about 1,000 other cases by telephone.
“For us, the main thing was the moral support we got from them,” Deloris O’Brien said. “It was exciting for us to get this baby, and they made it seem exciting for them too. Even to this day, we stay in touch. We were people to them. We weren’t just a file. BABIES ADOPTED OUTSIDE U.S. BY AMERICANS
Region Number Asia 7,614 South America 1,363 Central America 654 North America 319 Europe 122 Africa 22 Oceania 3 TOTAL 10,097
Source: International Adoption Clinic