Understanding the Medical Information in Your Referral Packet
Medical diagnoses. In our study of over 300 potential adotees from Eastern Europe, specific medical diagnoses were listed in over 90% of referral documents. However, many of these diagnoses were obsure (vegito-visceral syndrome); utilized arcane terminology (oligophrenia); or had terrifying prognoses such as perinatal encephalopathy, muscle tone abnormalities (e.g., spastic quadraparesis, pyramidal syndrome, myotonic syndrome), hypertension-hydrocephal syndrome and intrapartum spinal trauma. What do these diagnoses really mean and are they correct?
The use of medical terminology differs among countries. The best example is perinatal encephalopathy, a diagnosis listed in close to 100% of children referred from Russia. To most physicians in the United States, perinatal encephalopathy is an ominous condition which denotes a child at high risk of cerebral palsy and mental retardation. In Russia, the diagnosis may be made if the attending physician feels there is evidence from the history or physical exam that the child was "stressed" at some point in the pregnancy, delivery or post-partum period. In other words, the child--in their minds--is at risk for neurologic damage. A course of therapy is then prescripbed and most children "recover" by a year of age. Complicating the use of this term is that the diagnosis may also be applied in situations where the orphanage director doese not want to appear to be placing too many "normal" children abroad or of the institution wants to be eligible for additional funding.
The indiscriminate and non-medical use of these and other terms has led many adoption professionals to advise their clients to ignore the m edical diagnoses listed in their child's medical history. However, you should never completely igore any diagnosis unless the records contain evidence that suggests the diagnosis is incorrect.
Your first step is to seek counsel from your physician. A child with a diagnosis of "perinatal encephalopathy" who rolls over at four months, sits at seven, and walks at twelve does not have the motor impairments consistent with their diagnosis. However, acquisition of developmental milestones within an institutional care environment is usually delayed. In situations where the accuracy of a diagnosis is questioned, seek assistance from a physician who has experience interpreting adoption medical information.
The videotape. You will perhaps never be able to adequately describe the feelings you experience when you first see your child; however, in addition to life-long memory, videotapes can provide unique and invaluable medical information about your child. When reviewing the video, remember the following:
A video captures only a tiny fraction of your child's life. The bright lights, additional attention and conflicting commands from caregivers often confuse a child--portraying them either immoble, non-communicative zombies, or as performing puppets with little sense of self-direction or awareness. Time of day and relationship to mealtimes make a tremendous difference in how a child responds--parents, think about what it's like before doing dinner time in your home.
A video is rarely well enough made or of sufficient technical quality to confirm a specific medical diagnosis; it is another piece of information. While all pieces of information are valuable, remember to interpret it in the context of all other information available on your child.
The embassy physical. U.S. immigration law mandates a medical examination by an embassy-approved physician prior to issuing an entry VISA to the United States. This examination is designed to detect infectious diseases that have an impact on public health, not to detect other medical problems in your child. Worldwide, tremendous variability exists in the quality of this examination. Don't count on the embassy physical doing anything more than confirming that your child is alive.
Growth and developmental milestones. Growth and development proceed on the basis of biological, not chronological, age. Subtract the number of months your child was premature from his/her chronological age to determine the corrected gestational age. The corrected gestational age, not chronological age, should be used for plotting growth and evaluating development. For example, a child born at 28 weeks gestation is three months premature (a full-term baby is born at 40 weeks gestation). Six months after birth, this child should be plotted at the three-month point on growth curves and should have reached three months on a developmental checklist. As a general rule, you can stop correcting for prematurity by a child's second birthday.
Growth and development can be altered by the environment in which a child develops. The most common type of growth failure seen in orphanages is psychosocial growth retardation, a stress-induced failure of linear growth (kids are short). Children with psychosocial growth retardation fall behind one month of growth for every three to four months of orphanage life. If a child was in the orphanage from birth to four years of age, we would expect the height to be appropriate for a 36- to 39-month-old child (about 9 to 12 months behind). The weight may also be affected, but not as much as height. Growth failure due to malnutrition is much less common and affects weight more than height.
The most important measurement may be head circumference, which increases in size in response to brain growth. A head that is too small or too large may signal significant neurological problems.
Development can be altered by too much or too little attention. The Korean child who is continually carried by a foster mother may not have gross motor skills (sitting, crawling, etc.) that are age appropriate for children born in the United States. These delays rapidly correct when a child is given a chance to explore the environment on his/her own. Too little attention, the usual situation in institutionalized care settings, leads to significant delays in all areas of develpoment--delays that may not resolve quickly. Evaluating an institutionalized child is difficult because delays may be caused by the deficiencies of orphanage life, or they may be due to true neurologic abnormalities or innate intellectual impairment.
History of alcohol use during pregnancy. Alcohol ingestion during pregnancy is the leading cause of preventable mental retardation in the world today. In Eastern Europe, maternal alcoholism was mentioned in 17% of women studied and fetal alcohol syndrome in 2.4 of referral documents. It may be possible to diagnose fetal alcohol syndrome using growth and development information and pictures/videotapes, but the diagnosis can be missed early in life even by experts. It is almost impossible to diagnose milder degrees of alcohol impairment, sometimes referred to as fetal alcohol effect, prior to arrival in this country. If you are conisdering adopting an alcohol-exposed child, you must read The Broken Cord by Michael Dorris, a beautifully written and extremely informative book about parenting an adopted child with fetal alcohol syndrome.
Blood tests in the country of origin. Pre-placement blood testing is variable. A defined battery of tests is not currently required for VISA approval for the majority of orphans. In some cases, testing may be ordered by the Embassy for the Embassy's physician when a specific communicable disease is common in the community or suspected in your child. Some agencies or countries have a set testing protocol for children prior to referral. Therefore, blood tests may have been performed on your child. If not, five questions should be asked prior to requesting blood tests for specific diseases: