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
Rybchonok 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.
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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.
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