Schneider Childrens Hospital
The Long Island Campus for the Albert Einstein
College Of Medicine
269-01 76TH aVENUE, New Hyde
Park, NY 11040 · PHONE (718) 470-4000 · FAX (718) 343-3578 · adoption@lij.edu
Adoption Evaluation Center Russian Adoption: Assessing the Risks
"Red Flags" vs. "Red Herrings"
Adoption of a child from Russia presents many challenges
and opportunities. Although there are many "reasonably healthy" children in Russian orphanages waiting to be adopted, there
are also a considerable number of children with significant medical or developmental problems. Unfortunately, the adoption
process is an imperfect process with many inherent obstacles and risks, and the media attention in this area has been generally
quite negative. Although this unbalanced coverage has "heightened sensitivity" (prompting families to educate themselves about
these developmental and medical issues), it has perhaps exaggerated the true risks currently associated with adoption of a
very young child from Russia.
Hopeful Trends: Children in Russian orphanages are at increased risk for malnutrition, developmental delay, poor growth,
medical illnesses, and emotional disorders. Although some orphanages have more resources than others, none could be considered
a satisfactory environment for a child of any age. Thus, with each passing month and year, children in these orphanages tend
to lag further and further behind in their growth and development.
If this is so, how can one ever feel positively about
the process and ones prospects of adopting a child with who will likely have normal growth and development? I believe several
factors justify this relative optimism the availability of younger children for adoption, the availability of pre-adoption
videos to assist in the screening process, and the availability of international adoption medical consultants like myself
who can review medical summaries and videos, counsel prospective parents about risks, and identify additional information
that may be needed.
Younger Children: Three years ago, it was difficult to adopt a child below 18 months of age, whereas now, many referrals
are infants children under 1 year of age. The ability to adopt infants from Russia means that these children will have spent
a much shorter time in the orphanage setting. All of the research to date suggests that the detrimental effects of institutionalization
are progressive over time, and that the younger the child at adoption, the greater his or her ability to "bounce back". Although
the factors that determine resilience are not well understood, children under 1- 2 years of age are clearly most resilient.
Adopting an infant or young toddler has several advantages
as well as disadvantages. Although the adverse effects of institutionalization will be minimized if a child is adopted within
the first 6 12 months of life, it is somewhat more difficult during infancy to identify certain "biologically-based" developmental
and neurological impairments. Fortunately, the "biological" risks are generally quite low compared to the risks of developmental
delay associated with institutionalization.
Videos: The overwhelming majority of agencies that refer children from Russian orphanages provide prospective
adoptive parents with a videotape of the child. Although these videos vary considerably in length and quality, they have the
potential to provide at least some information about the childs size, nutritional status, motor skills, social skills, language,
personality, and overall health. Admittedly, since these videos typically only depict a child for 2-10 minutes and may record
minimal activity or interaction, they sometimes fail to provide any meaningful developmental information. Similarly, videos
can sometimes raise clinical "red flags" such as "fisting" or "low muscle tone" which later resolves and turn out to be "red
herrings". In spite of their limitations, however, videos make it possible for adoptive parents to have qualified medical
consultants review the tapes objectively, looking for signs of serious medical or developmental problems.
Occasionally, an agency is unable to provide clients
with a videotape of the child at the time of referral; in these instances, photographs and/or answers to specific questions
can often provide adequate assurance that the child is not at high risk for developmental or behavioral problems. Though not
essential, videos are often quite helpful. Yes, a movie picture is worth a thousand words!
Adoption Medicine Consultants: Individuals or couples interested in adopting a child
from Russia or an Eastern European country should obtain
a pre-adoption medical
consultation when they get their referral. This consultation
will help you understand the
childs medical history and evaluate his or her current
nutritional status and
developmental functioning.
Moreover, the consulting physician should be able to
counsel you as to which issues are likely
to resolve and which may represent long-term concerns. Although many of the children adopted from Eastern Europe do not have any major health problems or developmental disabilities, these children are at increased risk for
many different medical and developmental disorders -- some of which may not be apparent at the time of referral and may not
be treatable. Thus, the pre-adoption medical consultation will reduce one's risk of adopting a child with unexpected medical or developmental problems; unfortunately, one
can never eliminate risk.
Obstacles to Pre-adoption Screening: There are many inherent limitations and obstacles to accurately assessing a child's current status and future prospects.
* Information regarding the child's medical history
or developmental status may be incomplete or inaccurate.
* There is the potential to over-interpret what may
be an otherwise relatively benign or minor condition or finding.
* Even when the complete medical history is available,
the specific cause of a child's developmental delay or disability may never be never known.
* The younger the child, the more difficult it may be
to detect certain developmental problems. For example, cerebral palsy cannot always be detected in the first 6-8 months of
life. Similarly, mental retardation, autism, and speech-language disorders cannot reliably be detected in the first 12-15
months of life. Learning disabilities and attention-deficit hyperactivity disorder are generally not recognized before 4-5
years of age.
* Children generally develop in a predictable sequence;
however, there is considerable variation in the rate at which they develop. In other words, there is a broad range of what
constitutes "normal" development.
* Perhaps most importantly, children are often very
"resilient". The younger the child, the less certain one can be of the long term implications of mild developmental delays
or past medical problems.
Indicators of Neurological Impairment ("Red Flags")
The following is a list of signs or
symptoms which strongly suggest underlying neurological
impairment. If a child manifests one or more of these findings, there is an increased likelihood that the child may have a major handicapping condition. However, clinical interpretation must be done cautiously and in conjunction with
a pediatric specialist (preferably
an adoption medicine consultant), for some of these signs and symptoms can be also seen in children without major neurological or developmental problems.* Problems with swallowing, as manifested by: poor weight gain, persistent
drooling, inability to chew or swallow
an age-appropriate diet (for example, table
foods after 15-18 months), excessively
long time required to feed the child, persistent
"spitting up" (reflux or regurgitation beyond 6 months of age
*Seizures without fever: Seizures
that occur only with fever are common in children between the ages of 6 months and 6 years, and generally do not represent
a risk factor for major developmental problems. Many children with a history of just one seizure (with or without fever) do
not go on to have recurrent seizures or epilepsy. A history of recurrent seizures would be especially concerning if the child
has an unusually small head ("microcephaly") or other neurological problems.
* Muscle stiffness or spasticity: Difficulty moving (flexing and extending) the joints of the upper and
lower extremities. It is especially important to check for resistance to movement at the ankles; with the child relaxed, one
should be able to bend the ankles up so that they are at least perpendicular (a 90° angle) to the lower legs.
* Toe walking: Toe walking is common when children first learn to walk and are cruising (walking holding on) from one
object to another. Toe walking is also somewhat common in children with language delay. It is important to assess the tone
and range of motion at the ankles in any child with toe walking; if it is difficult to bend the ankle to a perpendicular when
the child is not actively resisting, this is likely a sign of cerebral palsy.
* Arching: Arching backward of the back or neck can also be a sign of cerebral palsy; this may be evident either
when holding an infant or when the child is lying down. Arching in association with delayed motor development is especially
concerning. If a child arches when held but not when lying down, this would suggest an attachment disorder. Arching should
not be confused with squirminess in a child who does not want to be held.
* Floppiness (low muscle tone) associated with gross
motor delay: Gross motor development is
commonly delayed in children reared in institutions, and their muscle tone may be mildly decreased, especially if somewhat
small or undernourished. If the child has very low muscle tone (such as "rag doll" floppiness), this would be quite concerning.
One way to assess trunk tone is to pick the child up under his/her arms; the shoulder girdle muscle tone should not allow
the child to slip through your arms.
* Microcephaly: Delays in head growth (small head circumference) are not uncommon in children reared in orphanages who
also exhibit poor weight gain and slow linear growth (short stature). However, if the head size (circumference) was small
at birth (<5%ile ) or shows significantly less growth than the weight or length, this would be suggestive of neurological
injury or impairment. This can only be meaningfully assessed using growth charts for weight, length, and head circumference.
* Abnormal head shape: The head shape can often be unusually shaped in premature infants. It
can be asymmetric for relatively benign reasons (lying on one side too much). Rarely, abnormal head shape can be a sign of
abnormal brain development.
* Early "handedness": Babies should not show any hand preference during their first year of
life. Toddlers usually manifest handedness between 12 and 24 months, typically after 18 months. Babies between 6 and 12 months
of age should reach for objects with whichever hand is closer to the object.
* Severe developmental delay: Mild developmental delays are common in an orphanage child. If a childs
developmental level is more than 50% below his age, this would suggest these delays may not be orphanage related or that the
child may not have full catch-up potential. For example, one would be especially concerned if a 12 month old child were not
able to do most of the things more typically expected of a 6 month old.
Red Herrings
Parents and pediatricians will sometimes focus on clinical
factors, though clinically noteworthy, tend to have little predictive value. I refer to these as the "red herrings". They
include: * "Russian diagnoses": Most children
referred from Russian orphanages have one or more diagnoses suggesting neurological impairment (e.g., "perinatal encephalopathy",
"intracranial hypertension", or "pyramidal insufficiency"). These diagnoses are so ubiquitous that they, alone, should not
influence ones decision to accept or reject a referral. An adoption medicine consultant should review the available information
and video for you and formulate an independent assessment as to the likely risk of neurological impairment or other medical
problems. Medical summaries will often include various other Russian medical diagnoses which would be alarming if true. Results
of sophisticated diagnostic tests such as ultrasounds of the abdomen, heart ("echocardiogram") or brain ("neurosonogram")
should neither be blindly dismissed nor accepted. Interpretation should be done on a case-by-case basis by the medical consultant.
* Apgar Scores: Apgar scores are scores given to babies
at 1 and 5 minutes of age and reflect the babys "vitality" (color, heart rate, vigor etc.) immediately following delivery.
These scores range from 0 to10, with typical "good" scores being 7 or above. Because problems with delivery can result in
lower Apgar scores, there has been considerable focus on low "Apgar scores" as a predictor of later problems. Unfortunately,
the Apgar score is a very poor predictor of developmental problems. Yes, children with very low 5-minute Apgar scores (e.g.,
< 4) are at some increased risk for neurodevelopmental disabilities. Nonetheless, most children with mental retardation,
cerebral palsy, or other developmental problems did not have low Apgar scores at birth, and conversely, most children with
low Apgar scores do not later have mental retardation or cerebral palsy. Developmental delay: Children who live in the Russian orphanages will ultimately exhibit developmental
delays in 1 or more areas of function. A medical consultant should be able to help assign a "developmental age" (based on
the history) for a specific child. If an infant or toddler does not exhibit any of the previously listed "Red Flags" and only
has mild delays (i.e., the developmental age is no less than 2/3 of the childs chronologic age), the potential for catch-up
should be quite good.
Fetal Alcohol Syndrome Alcohol abuse is widespread within Russia, and this brings with it the
concern that a child may have been exposed to alcohol prenatally. It is now well known that maternal alcohol abuse during
pregnancy can lead to poor growth, developmental delays, and characteristic facial features. The facial features of FAS are
best evaluated by a pediatrician; these features sometimes disappear during infancy, and in other children, only appear after
infancy. Thus, the absence of the FAS facial features at one point in time is reassuring, but not definitive.
If a child has all 3 clinical features (growth delays,
developmental delays, and characteristic facial features), then the child is said to have "Fetal Alcohol Syndrome " or "FAS".
However, more commonly, children exposed to alcohol prenatally will only have 1 or 2 of these findings, not all 3. These children
have been previously described as having "fetal alcohol effects" ("FAE").
Unfortunately, there are many obstacles to making an
accurate diagnosis of FAE; this is especially true when one has limited maternal social or obstetric information, when one
must rely on photos or videos, and when the institutional setting itself often leads to delayed growth and development. For
these reasons, the diagnosis of FAS or FAE should probably only be considered if there was a known history of alcohol abuse
during the pregnancy, if the child was unusually small at birth (weight, length, or head size), if the child has several of
the characteristic facial features, or if the childs developmental delays are greater than expected for an institutionalized
child.
Not all children born to alcohol-abusing women will
have FAS or FAE; some children will have no obvious clinical features. Despite the frequent concerns about FAS and FAE, the
incidence of true FAS among Russian referrals is quite low. In a chart review of 113 pre-adoption evaluations, Dr. Jane Aronson
only identified 2 cases that met strict criteria for FAS.
Alcoholism is a major public health problem in Russia.
Fortunately, FAS poses a relatively low risk for families adopting from that region. Individuals planning to adopt from Russia
should educate themselves about FAS and FAE in general, and they should more specifically discuss the possibility of FAS or
FAE with their adoption medicine consultant when they get a referral.
Conclusion: Children do not thrive in orphanages. The orphanages in Russia and Eastern Europe are deplorable in many regards, and yes, these institutional settings
inexorably take their toll on the medical,
nutritional, developmental, and emotional health of thousands of young lives that reside there. These grim realities notwithstanding, there are many wonderful children to love and adopt. Adoption agencies that
place children from Russia can put you
in touch with hundreds of families that now have wonderfully healthy children at home. The Internet mail lists (such as APR) are also rich with tales from proud and elated parents of children adopted from Russian orphanages
who are now thriving in every sense.
Many of the risks previously associated
with adopting from Russia have diminished. Consultation with an experienced adoption medicine consultant can substantially
further reduce ones risk of significant medical, developmental, or emotional problems. I would estimate that 25% of the younger
children referred to me for evaluation represent "low risk" referrals (that is, only mild delays in growth or development
and no apparent significant medical problems). These children will almost certainly thrive once placed in a nurturing home.
Similarly, 50% of the referrals I review I consider "moderate risk" because these children have somewhat greater delays in
their growth or development or there are one or more potentially significant medical issues in the medical summary.
Although I do not have follow-up data to confirm my clinical impression, I believe that most of these children also do quite
well. My "high risk" category (the remaining 25%) is reserved for children with more serious medical problems or for children
who have significant delays in growth or development which are not likely due to the institutional setting alone.
As with all major decisions and long term commitments,
there are elements of risk and uncertainty inherent in the Russian adoption process. To paraphrase a famous physicist, it
is very difficult to make predictions especially about the future. Adoption medicine consultants help families sort out the
"red flags" from the "red herrings", identify the salient and credible medical issues, and place that particular referral
into a broader clinical context.
As a board-certified pediatrician specializing in the
evaluation of children with developmental problems, I appreciate the many obstacles and limitations that are intrinsic to
the adoption process. I know that adopting from Russia and Easter Europe brings with it additional anxieties and frustrations,
and that these risks cannot be dismissed or ignored. However, for those individuals, couples, and families who are considering
adopting an infant or toddler from this region, I believe there are many wonderful children just waiting for a new life waiting
to laugh and to smile longing to love and be loved.
REVISED: 12/26/00 AA
