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.
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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.
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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.”
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.
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