Russian Medical Reports: Terminology
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Perinatal Encephalopathy and other neurological
Hip Dysplasia
Congenital Syphilis
Videos
Frequently prospective adoptive parents (and their advising physicians) are stunned by the arrival of a Russian medical report describing the child that has been referred to them. The information seems to be at odds with what their agency has told them, previous information received about the child, and even the evidence of their own eyes if they have seen videos.
Why Russian medical reports are the way they are
It is sometimes said that diagnoses are exaggerated because only unhealthy children may be adopted or to increase the funding available to the orphanage. In my experience this is simply not the case, physicians in Russia believe what they are writing.
The major difficulty with interpreting these reports stems from some particularities of the Russian medical system. Russian physicians practice medicine differently from the physicians with whom you are familiar. Diagnostic categories are different, concepts of pathophysiology are different, methods of assessment are different, the psychology of physicians is different, etc. Even within the same field, the lack of formal standardized certification and postgraduate training makes specialists at times seem to speak different dialects.
An example of differences is pediatric neurology which is a relatively rare specialty in North America. In the west these physicians are quite highly trained and experienced. In Russia, however, it is quite a common specialty. This is a result of a very strong trend to sub-specialization in the Russian system. Russian patients have come to expect to see a series of sub-specialists for their health care.
In pediatric care, Russian parents believe it is necessary for their child to see a pediatric neurologist regularly in the first year of life (not to mention the general pediatrician, pediatric orthopedic physician, pediatric ophthalmologist, and pediatric surgeon, etc.) The pediatric neurologist performs the examination and developmental assessment that in western countries would normally be performed by a Family Physician or Pediatrician. Moreover, the result of this consultation is usually a number of diagnoses rather than detailed history and description of physical findings. The diagnoses of a specialist in Russia is rarely questioned by another physician of a different specialty. (This is a psychological feature of Russian medicine).
The usual training of a pediatric neurologist is about two years after medical school. They perform the assessments mentioned above with some odd twists. Due to years of intellectual isolation, Russian physicians have different concepts of pathophysiology and treatment. Diagnostic terms and therapy are often different from those found in western medicine.
It is very important to obtain good medical reports, but they are very difficult to interpret. Usually there are vague, but rather alarming references to CNS diagnoses such as perinatal encephalopathy, pyramidal insufficiency, etc. Usually there is no associated historical or examination data.
Suggested approach to the Medical Reports:
1) Gather the facts - information about the pregnancy and delivery, prematurity, numbers and dates (i.e. growth measurements), specific illnesses and diagnoses, specific physical findings, specific lab results and other investigations, developmental milestones.
2) Weigh the facts - Lab results may be unreliable, cranial sonograms are usually over interpreted. Consultant's reports may consist of little more than a series of unsupported and unusual diagnoses. The amount of reliable information available may not be great, so it is better to determine what is trustworthy and interpret this carefully.
3) Integrate other sources of information -Videos are important if available, information and observations of the child by a trusted agency representative are important, etc.
4) Obtain a professional opinion - reports must be interpreted in context, but do not forget that while over diagnosis is common, under diagnosis can be a more serious problem.
5) Request more information if necessary - If yellow flags are apparent in the medical report, now is the opportunity to follow them up. At the same time, vague requests to agencies for more medical information usually yield only a greater volume of worthless material. Consult with your medical advisor and make any requests for further information focussed and realistic. (I have seen apparent problems evaporate by a simple request for repeat head measurements). Remember also that your agency must advocate for two clients. The child is also a client whether they pay the fees or not. Responsible agencies make all efforts to serve both child and prospective parent. Though nerves can become frayed, it is never the case that a reputable agency will intentionally mislead prospective parents.
6) Know yourself and your family - Some prospective parents are willing to accept more uncertainty than others. Some have different expectations. Exploration of these issues is an important part of pre-adoption counseling.
Dr. Vsevolod Rybchonokmailto.gif (96 bytes) is a Moscow physician who has seen numerous children for adoption examinations in the last five years. He comments that in his experience some common causes of difficulty in obtaining valid medical information are:
- illegibility of hand-written original Russian medical record or its photocopy;
- frequent errors in translation or acquisition of data;
- errors in converting from metric system
- lack of such important data as date of report, current anthropometric measurements, and description how is child doing currently in term of his development;
- improper interpretation of the record by translator;
- lack of standard protocols and even terminology within given medical specialties;
- frequent non adequate addressing of minor congenital abnormalities (skin tag around the ear, great toe malposition etc.);
- unclear current status;
- failure to demonstrate how one or another diagnosis has been confirmed.
Perinatal Encephalopathy
These observations about perinatal encephalopathy apply also to pyramidal syndrome, pyramidal insufficiency, vegetative dystonia, spastic tetraparesis, syndrome of motion disorder, perinatal insult of the CNS, natal trauma of the cervical spine, and others neurological diagnoses
1) the frequency of appearance of these diagnoses is dependent on the facility from which the child is adopted;
2) in most orphanages the frequency is high enough to make the diagnosis meaningless (95% or so);
3) usually the diagnosis is stated without corroborating medical evidence - physical findings are not noted, no laboratory or diagnostic studies mentioned, etc. Most frequently the diagnosis of perinatal encephalopathy is applied in the maternity home or Children's Hospital prior to orphanage admission.
4) while the diagnosis itself sounds alarming to both medical and non-medical individuals, it does not fit a precise western diagnostic category. Western physicians can easily imagine what it might mean, but they do not know, and without further information the diagnosis will be difficult for them to deal with. Perinatal encephalopathy does not correspond to the western diagnosis of cerebral palsy; Russian physicians are quite aware of CP as a disticnt clinical entity and will communicate concerns about this diagnosis using the specific term.
5) Most consultants questioned have not been able to give a clear explanation of the term; it can be applied solely on the basis of history (known or suspected problems during the pregnancy). Perinatal encephalopathy might also be diagnosed on the basis of a number of physical findings - such as quivering of the chin and fingers when a child is crying or irritability. (We have found many cases where the origin of the diagnosis could be traced to observations of infant behavior that in the west would be termed fussiness.) The medical theory behind this diagnosis is based on particularities of Russian medical concepts of pathophysiology.
6) A draft text translation of "Perinatal Hypoxic Neurological Syndromes" is available at this site. This makes for interesting reading. Or try the Manual relating to neurological examination of the newborn.
7) One of the more significant questions related to the diagnosis of perinatal encephalopathy and related neurological diagnoses is the question of treatment. Most of these children have been subjected to courses of treatment involving multiple injections of vitamins and "neuro-enhancers". In an institutional setting this clearly increases risks of hepatitis and HIV. At least equally significant is the waste of resources that could have been allocated to food, medicines and increasing caretaker/child ratios.
Hip Dysplasia:
This diagnosis is mentioned as it appears reasonably frequently in Russian medical reports. It is an unsatisfactory term and indicates little more than a problem or suspected problem with a hip joint. It potentially includes what would be termed in the west a "congenital hip dislocation" as well as the much more frequent "dislocatable" hip. Usually there is little information indicating the basis of the diagnosis or whether ultrasound or radiological tests have been performed. The diagnosis is regional, you may expect it to occur regularly in certain regions (unless the specialist is on vacation).
Congenital Syphilis
This short paragraph is written because the diagnosis is now frequently seen on adoption medical reports. Syphilis has been on the increase in Russia for the last ten years. Russian obstetricians and pediatricians are very alert to the possability of maternal infection. Mothers are routinely screened in the third trimester of pregnancy and proper treatment given. If maternal history is unknown, the possability of congenital syphilis is actively considered and investigations of the infant obtained. Subsequent treatment and follow up are adequate. Russian specialists as a whole are probably much more experienced with the management of this problem than their western counterparts. In general, if all else is well with a child, I don't become very excited about finding this diagnosis in the past history. Some follow up blood work is necessary to confirm cure, but prognosis is good.
A very nice review of the medical aspects of this problem has been prepared by the Wisconsin Association for Perinatal Care Congenital Syphilis
Videos:
It is clear that once prospective adoptive parents receive a referral, a bond begins to form with the prospective adoptive child. This bond will deepen upon seeing a photograph or a video, and this will occur whether the material is of good or poor quality from the standpoint of a medical professional.
From the standpoint of a young child, this may be for the best. The child has rather simple needs ... a loving and attentive family environment where basic requirements for nutrition and stimulation are provided. (Further opinions on precise requirements can reliably be expected from the child.)
Videos are an important source of information. Parents must balance their own knowledge of themselves and their own common sense against the understandably guarded opinions of their medical advisors. My advice is not to decline a referral on the basis of one video and one medical review. Children being variable from day to day (unlike adults), do not expect a video to be ideal. If all initial information appears worrisome to you, ask for review of child in one to two months and more information. Serious requests of this nature are understandable and acceptable by all reputable agencies.
Eric Downing, MD
www.russianadoption.org
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