Clinics help families deal with health issue

By Sandy Keefe

Across the country, international adoption clinics offer adoptive parents an array of services designed to support them in the life-altering decision of adopting a child from another country. Carol Weitzman, MD, Director of the Yale University Adoption Clinic and Assistant Professor of Pediatrics at the Yale Child Center and Yale University School of Medicine, described the process. "When we review records and videos prior to adoption, we share findings that let the prospective adoptive parents make an informed choice, to the best of our abilities. The underlying question: Is this a child who is at greater risk for medical problems or for long term behavioral and cognitive issues?"

In the long run, of course, there are no guarantees. Heidi Schwarzwald, MD, MPH, an assistant professor at the Baylor College of Medicine and a physician at the Texas Children's Health Center for International Adoptions, empathized, "These families face a lot of anxiety prior to the adoption, and we work to prepare up front for what they might expect. Most families make two trips overseas prior to finalizing the adoption. We'll give them a list of questions and things to look at during their trips, and meet with them when they return. We can give them some clues, but we can't diagnose all the issues a child may ultimately face in those initial visits, and we're very up-front about that when we talk with the parents."

Medical Concerns

In many cases, the medical records and other documents sent through international adoption agencies are incomplete or even misleading. "We see children from all over—Russia and the Eastern European countries, China, Central America, South Korea and a few from South America," enumerated Weitzman. "When we receive medical reports from those countries, we read all sorts of diagnoses that are not that applicable here."

Kati Koranyi, MD, co-director of the Children's Hospital International Adoption Clinic at Columbus (Ohio) Children's Hospital, concurred, "Russian doctors often use words that don't translate well into English, as well as terminology that is fairly meaningless to us. For example, we often see medical reports from Russia that list a diagnosis of pediatric encephalopathy. That descriptor could mean absolutely nothing at all, it could indicate severe cerebral palsy, or it could just refer to some degree of mental retardation. And I think sometimes it's used to cover up some degree of fetal alcohol syndrome (FAS)."

FAS can be a significant problem, particularly in children born to alcoholic mothers in Russia. "When FAS is severe, there are facial differences and other indicators that lead us to a diagnosis. When it's less severe, it may be several years before the parents begin to notice learning disabilities and behavioral issues secondary to the syndrome," Koranyi pointed out.

Communicable diseases are often a part of life in children who have been raised in large group settings overseas. "We screen for a number of infectious diseases," explained Dwight Powell, MD, an infectious disease specialist who serves as the medical director of the Children's Hospital International Adoption Clinic at Columbus (Ohio) Children's Hospital. "Theoretically, some of these tests are done in the native countries, but the accuracy is sometimes questionable. So we'll screen for parasitic infectious, all forms of hepatitis, tuberculosis, HIV, and syphilis. If we do find infections, such as latent tuberculosis (LTBI), most of the adoptive parents are generally very upbeat and willing to do whatever it takes to see it through." When medical concerns are identified, Powell and his associates make specialty referral care as needed, and ensure that the child has an appropriate primary care provider.

Oral-Motor and Feeding Issues

Occupational therapists, speech-language pathologists, nutritionists and dietitians play key roles at many of the international adoption clinics. "Some children have oral-motor problems, but even those with normal eating skills face significant adjustments to American food," Koranyi smiled. "Cabbage soup, for example, is a typical snack food for little ones in Russia. Here in the U.S., the children may be confused when they're offered typical American snack foods."

Koranyi described feeding issues common in many adopted children. "We've seen so many one-year-olds from Russia or China who have never had solid food. They're still being bottle fed. Most of these children come from orphanages where there are lots of kids and only a handful of caregivers. Everything is done in such a regimented manner and at the same time for each child. They go down the line of cribs, handing each of the children a bottle." Emphasizing that the over-worked caretakers are doing the best they can, Koranyi detailed the effects of this regimented feeding plan. "These toddlers end up with oral-motor issues because they're not used to the texture of solid foods, or to the feel of a spoon in their mouths. When they're offered a drink of milk or juice, they'll finish it in one sitting. Otherwise, they believe, the drink will be taken away from them."

"Most of the children that we see have been underfed," commented Kathryn Dole, MS, OTR, director of neurodevelopment at the International Adoption Clinic of the University of Minnesota. "Once they start eating, they often don't want to stop. On occasion, we do see children who have been force-fed, and we have to address problems secondary to those learned eating behaviors. Most of the chewing and swallowing concerns we see are experiential, and, with time and support, can be readily reversed."

Developmental Delays

"We have such a very broad range here, anywhere from kids with 3-4 month delays who catch up rapidly, to others who have more permanent developmental delays secondary to sensory integration dysfunction, brain injuries, undiagnosed cerebral palsy, and other medical problems," delineated Schwarzwald. "Some children have minor delays and do well until school age, when we begin to see isolated deficits in processing, reading, math, or logic."

Dole characterized the findings in the 2,000+ internationally-adopted children she's evaluated in the past eighteen years. "About a third of them are doing very well with minimum delays. Another third have a specific identifiable disability such as cerebral palsy or fetal alcohol syndrome, or perhaps general delays secondary to institutionalization, malnutrition, abuse, or emotional attachment issues. And then we have a final group who are questionable—they have subtle learning problems, speech and language delays, behavioral problems."

Dole pointed out that clinic staff see a higher incidence of learning problems and specific delays in the internationally-adopted children than in native-born youngsters. "We see learning problems that include attention issues, anxiety from children who have had inconsistent caregiving, as well as speech and language issues. So many of the kids who are trying to learn English are not at age-appropriate levels in their language of origin, which then impacts their speech and language development."

Weitzman, a developmental pediatrician by background, elaborated, "Kids who have suffered deprivation and loss in their lives are certainly at risk for developmental delays. In fact, about 2/3 of the children we see have been living in orphanages and have suffered a disruption in care–some have been in more than one facility." Weitzman is cautiously optimistic about the future for this group of children. "Most of them can be expected at some point in time to function within the same range as their typical peers. However, while they are within normal limits, there is still a difference between the mean scores for the adopted children and their peers. In order to get a handle on this difference, we need to explore the question of just how much plasticity there is in the developing child."

Fine Motor Delays

Koranyi reported that most of the children adopted from orphanages had global delays in both gross and fine motor skills, probably from sitting in cribs and high chairs most of the day. "They're not stimulated with toys or with social interactions. Interestingly, when we place one of these children in a room full of beautiful toys, they seem to be baffled and overwhelmed. They don't know what to do with this type of stimulation!" Many of the youngsters need to be taught the necessary skills to explore, manipulate, and enjoy the toys.

Dole agreed that the majority of the fine motor delays seen in her practice are experiential. "We tend to see delays in coordination and manipulation skills. It's a general rule of thumb that for every three months in an institution, you expect a month of delay. If the delay is greater than that, we are concerned that there's more going on than the effects of institutionalization."

Sensory Integration Issues

"We seem to see a lot of kids with sensory integration dysfunction," Schwarzwald offered. "We don't know exactly why the prevalence of SI disorders is so high in overseas adoptions, but we suspect that chaotic environments may have something to do with it. There's no way to really know the sensory background of each little one."

Dole, on the other hand, described a lower incidence of true sensory integration issues. "We tend to see more of the effects of sensory deprivation as compared to true sensory integration dysfunction. We do sensory profiling here, and have been finding that overall our kids have fewer sensory problems than we originally suspected."

Dole and her colleagues evaluate the children in a three-step process. "Medical or nutritional problems are clearly our first priority. Next, we'll look at transition-related issues such as sleep difficulties, feeding problems, or anxiety and behaviors. After that, we look at developmental issues as the child adjusts to the new environment. Many behaviors may actually be triggered by stress and adjustment, rather than sensory processing concerns." In order to minimize these concerns, Dole recommends that parents structure the home environment and offers concrete suggestions to reduce over-stimulation. "We also help the parents look at consistency and self-regulation, as well as behavior management. Children who do have significant sensory issues often benefit from working with an occupational therapist skilled in this area."

Promoting Optimal Development

Weitzman pointed out that the child's age at adoption is the clearest predictor of later cognitive development. "Children who are adopted by the age of six months tend to catch up to their peers," she remarked. "The downside is that we can't really alter the age at adoption. Here at Yale, we're conducting research to determine other significant predictors of developmental success. For example, we're just beginning to look at the preliminary data from a small study of nonverbal social communicative skills in adopted children. What do they show in the way of eye contact, gestures, how they operationalize social relationships?"

Weitzman spoke with enthusiasm of the day when adoption professionals will have more answers to offer families. "If this preliminary study does show that nonverbal social communication skills are a predictor of developmental success, then we'll replicate our findings with a large-scale study. This approach should give us answers: What is the best time to conduct developmental screenings on these kids? What instrument is the best for use by early intervention programs, pediatricians, and adoption agencies to identify the most high risk children?

And what interventions can we formulate for these families?"

As part of her ongoing investigation, Weitzman developed a ten-session curriculum for newly-adoptive parents. "What is different about parenting these adopted kids compared to other children?"

"We explore that question, along with the vulnerabilities of these kids, and help the parents develop appropriate parenting strategies. We want to assist the parents in promoting healthy relationships, building attachments, and getting in synch with their child."

Powell and his associates at the Children's Hospital in Columbus have participated with professionals from Capital University to start a legal group specializing in adoption law, and hope to set up a consortium with other Ohio-based international adoption professionals.

"There's a real need for support for the families who are doing international adoptions. In our area of the state alone, there are 300 international adoptions a year, so our clinic is exceeding its expectations by leaps and bounds.

Within this scenario, there's tremendous potential for a state-wide data base to share information between professionals who are interested in the whole area of development and the issues of social integration for these children.

All too often, the children and the families just aren't getting the support that they need after adoption."

Sandy Keefe, RN, MSN, is a nurse case manager for children with severe disabilities.