International adoption medicine and inequality in pediatric health care

Introduction

Over the past six months, I've seen about thirty children diagnosed with diverse medical problems: tuberculosis (TB), ADHD, cleft lips and palates, blood parasites, gut parasites, failure to thrive, unexplained scars, missing and malformed limbs, severe developmental delays, and malnourishment. These kids were born in Russia, Ukraine, Ethiopia, Uganda, Haiti, South Korea, China, the Philippines, India, Hungary, and Guatemala.

This medically and nationally diverse group of patients is found in the pediatric sub-specialty of international adoption medicine. I am conducting ethnographic fieldwork in one such adoption medicine clinic located near a large, Midwestern U.S. city.

My goal in this piece is to highlight one type of inequality built into contemporary pediatric health care in the United States: the differential treatment of similar populations. This inequality is made visible by juxtaposing international adoption medicine with health care available to other groups, particularly children of immigrant adults and child refugees.

International adoption and adoption medicine

At international adoption’s height in the mid-2000s, nearly 23,000 children a year were entering the U. S. Most children were young (under two years old) and relatively healthy.

International adoption looks very different now. Changes in international law, global economic crises, and nationalist debates and changing adoption policy within birth countries have led to a steep decline in the number of healthy infants available for adoption. In government fiscal year 2012 (October 2011-September 2012), just 8,668 foreign-born children were adopted by U.S. citizens (Office of Children’s Issues 2013).

At this stage in the history of international adoption, many adoptees are older, have spent significant time in institutional settings (orphanages), or are "special needs." In this context, “special needs” is a catch-all term used to indicate a range of possible descriptors: children described as “special needs” may have medical disorders, have exhibited behavioral problems, are developmentally delayed (as measured by Western standards), or are part of sibling groups.

In the 1980s and 1990s, as the number of internationally adopted children entering the U.S. was steadily rising, physicians and other medical professionals—many of them adoptive parents themselves—began epidemiological research on children adopted internationally. They recognized that the needs of internationally adopted children were not being adequately addressed by existing pediatric practice.

The American Academy of Pediatrics created a Section on Adoption and Foster Care in 2000, and the group—now called the Council on Foster Care, Adoption, and Kinship Care—has several hundred members (American Academy of Pediatrics n.d.). The focus on infectious disease, the care of post-institutionalized children, and calls for pediatricians to recognize the specific needs of internationally adopted children mark the beginning of what has coalesced into international adoption medicine. The typical international adoption clinic treats the infectious and developmental disorders seen as particular risks for internationally adopted children: TB, HIV, hepatitis, parasites, nutrition deficits, attachment disorders, developmental delays, and fetal alcohol syndrome. Children who have lived in orphanages or institutions other than family or kinship care are at greatest risk.

Adoptive parents are advised that their adopted children should be seen by a physician (preferably one who specializes in adoption medicine) as soon as possible upon entering the country. What happens in this initial screening? The list below is specific to the clinic in which I am doing my research, but is comparable to the activities that occur in most international adoption medicine clinics:

• Comprehensive history (to the best of adoptive parents’ knowledge)
• Full physical exam by nurse
• Developmental assessment by an occupational therapist
• Discussion with social worker
• Exam and discussion with doctor
• TB skin test
• Test blood for vaccine titer levels
• Screen blood for parasites, HIV, syphilis, Hepatitis A & B
• Screen feces for parasites 

Children who need additional treatment are seen a month later. All clinic patients are advised to return six months later for an abbreviated exam and infectious disease screening. Some children have additional follow-up visits for treatment of infectious disease, parasites, problems with development, mental health disorders, or if they are having difficulty in school.

Given the breadth of disorders they must be familiar with, international adoption medicine doctors come from a variety of pediatric specialties. These include infectious disease, public health, tropical/global medicine, development and behavior, psychology, and psychiatry. In addition to medical doctors and nurses, the usually includes social workers and occupational, physical, and speech therapists. One of the primary roles of the adoption clinic is to make referrals to other specialists and connect children with appropriate early intervention services.

The sub-specialty of adoption medicine has grown; by my census, there are now over two dozen clinics in the U.S. serving internationally adopted children and their adoptive families. Just as the practice of international adoption has undergone a transformation, so has adoption medicine. With far fewer healthy infants entering the U.S., the patients seen in adoption medicine clinics are increasingly older and have greater special needs. [1]

Migrant care and international adoption medicine

The conditions affecting internationally adopted children are strikingly similar to those found in other pediatric populations—immigrant children, migrant children, refugees, children under state care in foster or group homes, and children living in poverty—but those populations are rarely treated in specialized clinics. My focus here is on health care for immigrant children, which includes documented, undocumented, and refugee children.

It is well established that immigrant children are in poorer physical health than are non-immigrant children, and that immigrant children are underserved by the U.S. health care system (Huang, Yu, and Ledsky 2006). Health organizations also recognize that immigrants, refugees, and the children of migrants need targeted care. The American Academy of Pediatrics’ policy statement on Immigrant, Homeless, and Migrant Children notes that these children are at greater risk for certain diseases and outcomes—infectious disease, anxiety, grief, developmental delays, etc.—and asks pediatricians to be aware of the needs of immigrant, migrant, and homeless children in their care (Committee on Community Health Services 2005). While refugees and documented immigrants are required to undergo a medical exam before coming to the U.S., this medical care is not comprehensive or ongoing. There are few clinics devoted to the health of immigrants and far fewer specializing in health care for child immigrants.

In this policy statement, the AAP groups internationally adopted children with immigrant children, but for the sake of clarity here, note that I’m differentiating between internationally adopted children (who are immigrants of a kind) and children who come to the U.S. with one or more parents. As orphans being adopted by U.S. citizens, adopted children have citizenship. Other immigrant children are in the U.S. with or without documentation.

Just as the AAP and other health care institutions recognize the special needs of all immigrant children, so do many adoption medicine practitioners. In general, the medical professionals who make up international adoption medicine are concerned about the health of other internationally-born immigrant children, as well as the health of U.S.-born children residing in foster care or other institutions. The practitioners I’ve talked with see that their expertise in the diseases and problems common to international adoptees could easily be extended to other pediatric populations.

Admittedly, the needs of internationally adopted children are not identical to the needs of other immigrant children. Adopted children may have unique developmental challenges resulting from institutionalization, especially in terms of attachment and cognitive functioning. However, other immigrant children, especially those who have experienced extreme poverty, family disruption, and violence face similar challenges.

On rare occasions, adoption clinics do see immigrant children and U.S.-born children in foster care. During the time I’ve been involved with research at the adoption clinic, the practitioners have seen several children who are not international adoptees. In one case, a mother and her four children went to the emergency room at the local children’s hospital. This refugee family was from Central Africa and spoke no English. The ER was able to address the immediate problem, but could not provide the screening and primary health care all of the children needed; it was clear that the children were in need of prompt and comprehensive care. Knowing that the adoption clinic was seeing patients the next day and that the clinic staff would be able to thoroughly evaluate all of the children, an ER staff member referred the family to the adoption clinic.

These children were strikingly similar to international adoptees, especially those from Central Africa. The kids showed signs of long-term malnutrition and the clinicians considered them at risk for TB, other infectious diseases, and parasites. And like adoptees, they needed to be re-screened six months later, as many diseases don’t appear until some months after infection.

This referral and others like it border on accidental. If it had not been for an employee who knew that the adoption clinic staff might have the expertise to treat these children, they may not have received the primary and specialized care they need. Pediatric care in the U.S. lacks the infrastructure to fully address the needs of all immigrant children. So why is it that there’s a safety net—in the form of a subspecialty and a widely articulated rationale for this subspecialty— for internationally adopted children but no such safety net for similar groups of children?

I see several reasons for this peculiarity: health insurance, documentation, and parental status. U.S. citizens adopting children must meet proscribed standards, including the ability to provide health care for the child, so nearly all internationally adopted children have private health insurance provided by adoptive parents. Unlike children in some similar pediatric populations, in almost all cases internationally adopted children enter the U.S. health care system with U.S. citizenship established. While health care—especially health care for children—should not depend on citizenship, in practice it often does. Immigrant families that are undocumented may be reluctant to engage with the public health system, especially in regions with strong anti-immigrant sentiment.

Parental status is critical here. By status, I mean the parent’s education, relative wealth, occupation, language, and comfort with the health care system. Parents of internationally adopted children are overwhelmingly white and wealthy by global standards. Most of the families I have encountered in the clinic include at least one parent who holds a white-color or professional job. Adoptive parents have also successfully navigated the “paper chase” of the adoption process. To many, the bureaucracy of U.S. health care pales in comparison to the overlapping bureaucracies of state adoption agencies, the U.S. State Department, international treaties, governments of birth countries, and orphanages and foster homes.

When the refugee family I discussed above visited the adoption clinic, one of the practitioners remarked that she was concerned about the children’s future because, in addition to their already poor health, they did not have a parent who could advocate for them. This mother speaks no English and must depend on others for the transportation, money, and knowledge needed to access the pediatric health care system. In other words, most parents of internationally adopted kids have the cultural capital that makes it easier to engage with and navigate health care institutions.

In several ways, immigrant children’s access to pediatric care depends on whether the child belongs to a certain kind of family. To be a part of a documented, citizen family means that specialized medical care is accessible to the immigrant child.

Differential care received by these similar pediatric populations both exposes underlying structural inequalities in the U.S. health care system and reveals how medical practice intersects with citizenship and privilege.

There is hope for resolving this discrepancy. The subspecialty of international adoption medicine developed rapidly in response to an emergent population with special needs. The interest among practitioners in serving all immigrant children points to possibilities for expansion of the field.

Emily J. Noonan is a doctoral candidate in anthropology at the University of North Carolina at Chapel Hill.

Notes

1. For comprehensive overviews of international adoption medicine, see Albers 2005; Miller 2005.

References

Albers, Lisa H., ed. 2005. International Adoption: Medical and Developmental Issues. Theme issue, Pediatric Clinics of North America 52(5).

American Academy of Pediatrics. n.d. Section on Adoption and Foster Care. , Accessed March 7, 2013.

Committee on Community Health Services. American Academy of Pediatrics. 2005. Providing Care for Immigrant, Homeless, and Migrant Children. Pediatrics 115(4):1095-1101.

Huang, Zhihuan Jennifer, Stella M. Yu, and Rebecca Ledsky. 2006. Health Status and Heath Service Access and Use Among Children in U.S. Immigrant Families. American Journal of Public Health 96(4):634-640.

Miller, Laurie C. 2005. The Handbook of International Adoption Medicine: A Guide for Physicians, Parents,and Providers. New York: Oxford University Press.

Office of Children’s Issues. U.S. Department of State. 2013. FY 2012 Annual Report on Intercountry Adoption, Accessed March 7, 2013. 2013. 

*Edited for clarity on 6/7/2013