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All in the family

by Cyril Manning

Alexandra and Charlotte Zieselman love flipping through their family photo albums. The 2-year-old twins don’t quite talk yet, but they eagerly pounce on the plastic-covered pages, pointing to pictures of themselves in their Shanghai orphanage, their first meeting with their American parents, Kimberly and Steven, and their arrival at their new home in the town of Milton, Mass., just in time for their first Christmas. For Kimberly and Steven, flipping through photo albums is more than a game to play with their daughters. They know that down the road, the history they provide for Alex and Charlotte through photos, stories and mementos will help the girls understand their past.

The road to adoption is never easy, and the Zieselmans endured the maze of bureaucracy, regulations and expenses familiar to any adoptive parent before they finally met their children in December 2001. One of the many resources they relied on during that journey was the Adoption Program at Children’s Hospital Boston, which helps prospective parents navigate the medical issues of adoption by reviewing records before an adoption is finalized and by providing a comprehensive evaluation once a child has arrived.

“There are many medical and developmental issues specific to international adoption,” says Lisa Albers, MD, MPH, director of the Adoption Program within Children’s Developmental Medicine Center. “Fifteen years ago, two-thirds of international adoptees were from [South] Korea, where there is a generally good standard of living and excellent health care. Today, three quarters of internationally adopted children are arriving from countries that rely on orphanages rather than foster care, have low per capita income, and difficulty providing adequate nutrition and health care.” When adoptive parents receive a referral from their agency, they receive information about a child, photos and sometimes a video. But before parents decide whether to accept the referral, many consult with a physician about the child’s potential medical issues. Since medical records and other information about international adoptees are often incomplete, misleading and unfamiliar to U.S. doctors, physicians specializing in adoptive issues are best suited to perform that comprehensive evaluation.

Kimberly (who works in Children’s Office of Child Advocacy) says there was very little information available when they found out about Alex and Charlotte. “I wouldn’t really call what we got from China ‘medical records.’ It was really just a form including some basic facts such as height and weight, along with a checklist of developmental criteria that the girls met. It confirmed that they recognized their names and could sit up with a little bit of help.” Aside from that, she says, “All we knew was that the girls had been brought to the orphanage by the police. It was only later, while in China, that we discovered they had been found at an address near the orphanage, weighing just four pounds each.”

The Zieselmans showed Albers the photographs their agency had given them. Although they were concerned by what appeared to be a lazy eye in one of the photos of Charlotte, Albers assured them that this wasn’t likely to be a problem, and if it was, it would be minor and treatable. More significantly, says Kimberly, Albers informed them that the orphanage where the girls lived for their first nine months had a history of neglect problems. “She was very sensitive to how she conveyed this to us,” says Kimberly. “She let us know that there had been a lot of improvements in the last few years, but she wanted us to be completely informed.”

Two days after accepting their referral and committing to be parents to the twins, the Zieselmans received a phone call from the director of their adoption agency. Charlotte had acute diarrhea and was in the hospital. The agency assured Kimberly and Steven that they could find them a new referral, but the new parents wouldn’t hear of it. They turned to Albers for reassurance that the situation shouldn’t derail the adoption, and insisted to the adoption agency that Alex and Charlotte were the children they intended to adopt. Charlotte recovered, and in December 2001, Kimberly and Steven joined more than a dozen other adoptive parents in a whirlwind trip to China to meet their children for the first time.

When the newly formed family arrived back in the United States, Albers ran a full battery of tests on the twins, looking for any medical or developmental issues that needed to be addressed through early intervention. Depending on a child’s country of origin and other risk factors, Albers says, she screens internationally adopted children for anemia, lead poisoning, HIV, parasites, rickets, syphilis, tuberculosis, developmental delays and fetal alcohol syndrome. Albers performed a full evaluation of the girls; ordered genetic tests to determine with greater certainty that they are identical, not fraternal twins; and screened Alex and Charlotte for hepatitis C, a particular concern because Kimberly, who keeps in touch with parents of other children from the twins’ orphanage by e-mail, had learned that several children from their old room had the infection. The girls proved healthy, but Albers told their parents not to be surprised by developmental delays, which are common among children who were cared for in an orphanage, since children tend to lose a month of developmental growth for every three months of institutionalization. The symptoms Alex and Charlotte displayed at the time of their adoption were neither unexpected nor long-lasting; though at 9 months old, Alex and Charlotte’s motor skills were lagging and they weren’t yet crawling on their own, the girls caught up within a few months in their new home.

While it turned out that Alex and Charlotte were both healthy, not every child who is referred from abroad is so lucky. “There are certainly families who are ready to adopt children with developmental issues, but that is a special type of adoption,” says Albers. (Visit http://www.childrenshospital.org/dream/summer2003/peterbruce.html for the story of one family who took that path.) “Many families I speak with are not prepared to deal with special needs,” says Albers, “and that’s a legitimate decision.”

When Nancy Johnston and her partner Sara* decided to start a family, for example, they knew they wanted a healthy baby. The couple chose to adopt internationally, and learned that there are many children in Guatemala in need of families —the third-highest source of international adoption referrals in the United States, after China and Russia. In April 2002, Nancy and Sara received a referral for a month-old baby boy. “On first flush everything looked great,” says Nancy. “We were unbelievably excited.” They contacted Albers for a pre-adoption consultation.

Some of the medical issues Albers encounters regularly correspond to different countries of origin—for example, lead poisoning and iodine deficiency are both common in children from China, and fetal alcohol syndrome is prevalent in Eastern Europe. These issues, however, are not usually a problem with children from Guatemala. But when Albers reviewed the medical records and photos Nancy and Sara received from their adoption agency, she was concerned about the low muscle tone and skin color in the photos, as well as other evidence of developmental problems. The specific issues were elusive, but there seemed to be genetic and endocrine problems, and Albers, who is fluent in Spanish, called the child’s pediatrician in Guatemala, who confirmed that the child was not developing normally. After further investigation, Albers didn’t have good news to report. “She asked how we felt about taking on a baby with special needs,” remembers Nancy. “We simply weren’t ready for that.”

The couple passed on the referral. “Thankfully,” says Nancy, “Dr. Albers was with us every step of the way.” In March 2003, the women met Anthony, a delightful 4-month-old boy from Guatemala who would soon become their son. “When he finally arrived, being able to bring him to Children’s and let Dr. Albers meet him was wonderful,” says Nancy.

Kimberly and Steven and Nancy and Sara know that adoption is not a single event, but an issue their families will continually deal with as the children grow. But for now, they are content to have happy, healthy children. “After everything we’d been through,” says Nancy, “we were prepared for Dr. Albers to find something wrong. Thankfully, that didn’t happen—and we know we can continue to find support at Children’s as our family grows.”


*The names Nancy, Sara and Anthony Johnston are pseudonyms to protect this family’s privacy.


In addition to pre-adoption consultations and post-adoption evaluations, Dr. Albers works in partnership with Kay Seligsohn, PhD, associate director of the Adoption Program, to provide comprehensive medical and neurodevelopmental services to families of children with developmental, behavioral or emotional concerns.

Dream is published biannually by Children's Hospital Boston. © 2003 Children's Hospital Boston. All rights reserved.