Dr. Jane Aronson, a specialist in adoption related medicals
Dr. Jane Aronson, a specialist in adoption related medicals
When I review a video, I first rate the quality of the video. What is the length of the video? Is the video blurry and unclear or taken with the child in the distance? These circumstances may make it difficult to evaluate the child for Fetal Alcohol Syndrome (FAS) or other syndromes. If the video is less than 1 minute, assessment of the child's development may be very limited because the child may not display enough behavior or development for evaluation.
A good quality video is usually at least 3-5 minutes in duration and it shows the child with and without clothes. Viewing the child's skin and extremities for birthmarks and possible deformities is helpful in diagnosing medical conditions. If there is a mention of a skin infection or birthmark in the medical abstract, it makes sense that we should be able to look at the actual abnormalities that are mentioned. Muscle tone can be better assessed if we can look at the extremities, as they are moving. There is no substitute for a hands-on exam. The symmetry of movement can be observed. If the movement of limbs is asymmetric (one side moves differently than the other side), we might diagnose a neurological (brain) abnormality. Looking at the child without clothes can assess the quality of the child's nutrition. Gender is confirmed as well.
Development in a Video
The developmental age of the child can be determined to some extent by looking at a good quality video. I use the standard Denver Developmental Screening Test which is a tool used by pediatricians to evaluate personal-social, gross motor, fine motor-adaptive, and language development (receptive and expressive) in children under the age of 6 years. Most of what we are looking at is motor development, since children don't vocalize too often in an orphanage. Children who are living in orphanages may be delayed just because they have been living in an institutionalized setting and their nutrition has been sub-optimal. There is a belief among adoption professionals that is supported by some limited medical data, that for every 3 months a child resides in an orphanage there may be a loss of one month of development. This is probably an over-simplification of the effect of orphanage life on the development of a child, but it is a useful tool.
It would probably be very easy for adoption professionals/facilitators to use the Denver Developmental Screening Test as a guide in making the video. Some age appropriate skills could be assessed and filmed. For example, a four-month-old infant is capable of reaching for toys or objects slightly out of reach. This could be easily filmed. A child can sit on his own between 6-8 months. Most kids from orphanages do not sit on their own between 6-8 months, but it would be great to be able show sitting when it does occur. Pulling to a stand, cruising, crawling, and standing alone for a few seconds is easy to depict in a video. Children follow past the midline at 2-3 months of age. Kids rake a raisin or a cheerio at 6-8 months and they have a neat pincer at 8-10 months. Filming a child eating is a terrific way to assess sucking and swallowing and interaction with the caretaker. Families who travel to an orphanage to adopt a child can be instructed to carry out the same tasks so that a video can be prepared for waiting families. With the advent of two trips in many countries, the actual adopting family can make this video and then show it to the adoption medical specialist on return to the U.S. Photos can be taken as well and a sequence of photos can depict development almost like a video. These photos can be E-mailed to an adoption medicine specialist as "jpg" files and they can be evaluated while families are in country for the adoption process.
Vocalizations are Uncommon
The date that the video was performed helps correlate the developmental age with the chronological age. Vocalizations are a very key aspect of development. Unfortunately, most of the children in orphanages do not vocalize. They have little one-on-one connection with their caretakers. The caretakers usually do not speak to the children as they change their clothes or feed the child. When I hear vocalizations in a video, I am pleasantly surprised and I consider this very encouraging. Receptive language in toddlers is sometimes seen when a child is asked to do simple tasks and the child is observed performing those tasks. This can be inferred from the video without an understanding of the language used by the orphanage staff. If a Russian-speaking staff member in the office can translate the conversation of the staff speaking on the video, much can be learned about the child. If a child is not doing much on a video, this does not necessarily mean that there is something seriously wrong with the child. A child may have just awakened from a nap or the child may have an acute illness, like a cold or just be hungry. This can alter a child's mood. The child may just not be motivated to do much because of lack of stimulation and lack of experience in interaction and in play. It is better to assess what is seen and not necessarily to judge what is not seen.
Social Interaction and Behavior in the Orphanage
Video should depict the child interacting with adults and other children; age appropriate toys can be offered to the child to see how the child handles toys. Children often have never seen the toy that they are offered during the video and their lack of familiarity is not a measure of intellect. Filming children with other children is enlightening; how they interact gives us information about the child's ability to socialize. This is especially valuable for older children, but not useful for toddlers who normally only exhibit parallel play. How a child interacts with the caretaker can reveal the child's comfort with an intimate relationship. It can tell us a lot about the style of social interaction between orphans and orphanage staff. This really helps parents understand how difficult life is in this setting and can explain why a child appears withdrawn and without much range of emotional response. Eye contact is especially important to note on the video. If a child averts gaze, looks away and down, this may mean that the child is feeling shy and afraid of the video process. If there is a lot of rocking and gaze aversion, this may reveal more withdrawn and depressed feelings. Attachment disorder cannot be diagnosed from a video. Lots of children are depressed and bored in orphanages. Rocking, head-banging, and other self-stimulating behaviors are more the norm in an orphanage and these behaviors disappear fairly quickly after adoption.
Fetal Alcohol Syndrome
There should be close-ups of the face so that the reviewer can comment on features consistent with Fetal Alcohol Syndrome. The face of the child should be perpendicular to the floor, not angled up or down, and it should be a close-up so that we can see the details of the mouth, lips, nose, eyes, eyebrows, etc. It is best that the child not be smiling, but be in a relaxed expression. FAS is a difficult diagnosis to make when the video is blurry or the face is too far away. If the child is less than one year of age the bones and muscles are changing so rapidly that FAS may be difficult to diagnose. It should be understood that children exposed to alcohol during pregnancy may not have any facial features consistent with FAS, but they may develop behavioral and developmental characteristics consistent with Fetal Alcohol Effect (FAE) or exposure to alcohol. It may not be so obvious until the child enters pre-school or primary school, when academic and social challenges increase and the child has problems with memory, learning, and behavior.
Sequential videos are very helpful in the assessment of a child. Occasionally, agencies can get tapes of children taken in early infancy with follow-up tapes. This really is enlightening. If the child has established a consistent pattern of development even with some delay, this is encouraging. If the child seems to display a substantial decrease in the developmental growth with the new video, then this is concerning and may reveal some underlying medical problem. An infant less than three months of age has a limited array of behaviors, which makes it difficult to assess very young infants, but at least we can comment on the child's alertness, eye contact with the caretaker, and some basic gross motor development. Children who are six months or more can be assessed more easily and follow-up video for these youngsters can be very telling.
Video of older children should depict them eating, drinking, playing with friends preferably outside where the child can run around. Observing children drawing pictures, identifying pictures that are on cards or in picture books is especially helpful as long as there is accompanying English translation. This helps the viewer assess the child's receptive and expressive language that is really the window to a child's cognitive development.
Plotting the heights, weights, and head circumferences that appear on the medical abstract is the most objective data from the medical abstract. How the child looks on a standard growth curve tells us a lot about the child's general health. About 50% of children in Russian orphanages fail to thrive and are found well below the standard growth curve. A pattern of growth is ideal because it can establish the reliability of the measurements. One set of points is not that useful. Most children in orphanages are undernourished and even if they start out at birth at an average weight and height, they generally do not maintain that growth velocity due to poor nutrition and institutionalization. Psychosocial dwarfism or psychosocial growth failure is a well-understood medical consequence of poor nutrition and institutionalization. If a child is adopted under the age of two years, there is usually good rebound with weight gain and linear growth improvement. It should also be understood that the birth weights of children in Russia are well below the average weight of a newborn in the U.S. The average birth weight in Russia is 2500 grams or 5 ½ pounds. Poor prenatal care, smoking, and drinking, and congenital infections during pregnancy are quite common in Russia and are the major causes for low birth weight in newborns.
Measurements can be unreliable. The staff who measure children in orphanages are well-meaning individuals who have little medical training. It is not unusual for scales to be broken and measuring tapes to stretch. Babies are notorious for squirming and measuring lengths is problematic even in the best circumstances. Videoing a staff member or better, yet, the orphanage doctor measuring the child is of particular benefit. We can hear the measurements stated in the video and assess their reliability. Measurements should be kept in the metric system and not be translated into English equivalents unless the metric still appears on the medical abstract. Simple mathematical mistakes can be made.
Medical Diagnoses and Defectology in Russia and the Former Soviet Union
The diagnoses found on Russian medical reports are responsible for a lot of the concern and anxiety associated with embarking on a Russian adoption. When I first started reviewing medical abstracts from Russia and Eastern Europe, I, too was unaccustomed to these medical phrases. With nine years of experience in adoption medicine and travel to Russia, Romania, Bulgaria, and research done by the Orphan Rangers , I can now say that I am accustomed to these unusual terms, but if you are looking for a clear-cut interpretation, you will not find this anywhere. What we know empirically is that physicians in Russia have a unique perspective of the health of newborn infants. This is the system of Defectology wherein infants are considered inherently defective and then over time, their defects resolve. Russian physicians believe that young infants and toddlers are neurologically immature. It is standard for a Russian child to be evaluated by a pediatric neurologist several times in the first few years of life. Children who are born to mothers with poor pre-natal care and any infections during the pregnancy may be diagnosed as having "prenatal or perinatal encephalopathy". This diagnosis would be based on pre-natal factors, which led the baby to be neurologically abnormal. A child who was born to a mother with syphilis might be diagnosed with prenatal or perinatal encephalopathy. Conditions that exist at the time of the delivery such as premature birth or complications at the time of the delivery like a home birth, might also contribute to the diagnosis of perinatal encephalopathy. It is a system of potentials. It is assumed that all babies are defective and that eventually these conditions will resolve with appropriate therapies such as massage and unusual medications not used in Western countries. So if the mother was ill during pregnancy or had no pre-natal care, then the child is considered potentially predisposed to various health conditions such as perinatal encephalopathy. This diagnosis is not based on any scientific research done in Russia or any other country. Russian physicians have had a long tradition of diagnosing serious pathology (disease) in healthy individuals. As I dismiss some of the significance of the confusing terminology on a medical report, I must also state that there may be medical conditions that clearly do exist for a particular child, that are not diagnosed by the physicians in Russia. I look for context when reviewing the medical reports.
Other diagnoses that are found commonly on medical abstracts are pyramidal insufficiency or deficiency, hypertensive-hyperexcitability syndrome, hydrocephalic-hypertensive syndrome, and neuro-reflex excitability syndrome. When I was in a maternity/infant hospital in Saratov in Russia in 1997, I asked the director of the newborn division about these diagnoses. She asked me to listen to a baby crying in the nursery across the room from where we were standing. She then told me that baby had neuro-reflex excitability. When I approached the infant, I noticed that the bottle which was propped on a rolled blanket had fallen away from her mouth. The child was hungry and irritable. Further, the baby was drinking Kefir, which is a sour, cold liquid yogurt, which is probably not that palatable.
Pyramidal insufficiency refers to the possible abnormality of the corticospinal tracts of the central nervous system that control the movements of the muscles of the body. If the child has even the slightest delay in gross motor development, then this diagnosis is applied. This is often interpreted as cerebral palsy, but this has not been borne out by my clinical experience. Children are often diagnosed with spastic tetraparesis which literally means weakness and spasticity of all four extremities. I see this commonly applied to children who are walking and appear quite normal for gross motor development. Instead of carefully examining a child and then doing investigative studies to confirm actual brain damage, the child is diagnosed as having brain damage because the nervous system appears to be immature. The bottom line is that the doctors are probably looking at normal children who are delayed due to malnutrition and lack of stimulation. They have little formal training in development and neurophysiology. It was clear to me after spending many hours discussing the system of diagnosis with staff physicians in orphanages that the diagnoses are based on a belief system, rather than a thinking process based in physiology and anatomy.
Many children get ultrasounds of the organs in the body. For the most part it is unclear why these tests are even ordered and performed. It cannot be assumed that because tests are ordered that there is actually a disease. The findings sound almost poetic, but they are most often not specific to the child and are not useful for medical diagnosis unless there is some clinical correlation. If we see some abnormality on the video or in person when the child arrives and has a complete physical examination, then further testing should be initiated.
When x-rays, sonograms, EKGs, EEGs, and echocardiograms are used to investigate the health of children in orphanages, these tests are performed by untrained individuals and the equipment is often antiquated and in disrepair. It is difficult to assess the reliability of ultrasound evaluations of the various organs. If the child has had a history of a urinary tract infection and has a mention of an abnormal kidney sonogram, I advise parents to have the kidney ultrasound repeated in the U.S. after the adoption. I do not recommend repeat testing in Russia.
I have not recommended routine head sonograms even if the head sonogram in Russia has been described as abnormal on the medical. If the child is a very premature or a low birth weight infant with an abnormal neurological exam or if a full term child has an abnormal neurological exam during my examination at the time the child arrives in the U.S., I would then recommend a head CT, or MRI in collaboration with a pediatric neurology consultation. I also recommend hearing and eye exams for infants who have a history of prematurity on the Russian medical abstract. Premature infants do have an increased incidence of hearing abnormalities and vision problems in any part of the world. I try to correlate testing in the U.S. with what I find on the physical exam in my office just as I would do for any child.
Myotonia, dystonia, or dyskinesia, are also favorite terms found on medical reports from Russia. These are terms to describe abnormal muscle tone. Most of the children in orphanages have abnormal muscle tone due to undernutrition, rickets (vitamin D and calcium deficiency), and lack of stimulation. With adequate nutrition and vitamin D supplementation, the muscle tone improves within a few months. In some cases children may benefit from physical therapy through Early Interventions services in their community. Sustained low tone can result in children who have been in the orphanage for longer periods of time.
Another common term found on almost every Russian medical is hypotrophy. When literally translated, it means "less growth". It is sometimes graded (I, II, III). It actually is an appropriately used term to describe the small size of newborns in Russia and then concomitant failure to thrive, which we see in orphanages as a result of poor nutrition and institutionalization. The grading system is subjective and does not appear to be standard from orphanage to orphanage. This grading system is also seen in describing prematurity, but again, is not standardized.
At least 10 % of the medical abstracts from Russia will mention this diagnosis; out of about 800 children adopted from Russia who I have evaluated in my office, I have one child with the actual diagnosis, which did necessitate surgery, and she is well and healthy. Developmental dysplasia of the hip (DDH) has a prevalence of less than 1% at birth and can be diagnosed well into the first year of life. It is not completely understood, but it is in simple terms abnormal development of the hip anatomy and if it goes undiagnosed and untreated, it can cause improper growth of the leg and it obviously will interfere with normal gross motor function. It is obviously over diagnosed on Russian abstracts. A good physical exam by a pediatrician upon arrival in the U.S. can easily rule this diagnosis out. If a child has DDH diagnosed late in infancy or childhood, surgery may be required and usually has an excellent outcome.
Open Oval Window
This is a diagnosis that is found all too often on Russian medicals and it is again an over diagnosis. It is actually a diagnosis that has no medical significance and is mostly found on autopsy or in some cases during a very detailed echocardiography examination. All of us have an oval window between the atria of the heart, but it closes early in life. If it remains open, it causes no ill effect.
I ntestinal Dysbacteriosis
This is one of my favorites of the diagnoses; it simply means that there are bacteria in the colon and the harmony of those bacteria may be out of balance. Children with diarrhea or gas are often diagnosed with this condition. Stool cultures are performed and the proof of the diagnosis is that there is bacteria found in the stool. All stools have bacteria, which are necessary to the normal functioning of the intestines. There are only a select number of bacteria that are considered "pathogens" in the colon and some of these are Salmonella, Campylobacter, Shigella, Yersinia, and some Escherichia coli. Intestinal dysbacteriosis is simply the finding of normal bacterial flora with non-specific symptoms. There is no need for treatment although, in Russia, children are often given antibiotics for this condition.
Medications and Therapies
Children living in orphanages are inevitably treated with an assortment of medications that are commonly not used in the U.S. Medications that are focused on improving blood and cerebrospinal fluid circulation are administered as are sedatives and anti-seizure medications like Phenobarbital (Luminal), carbamazipine (Tegretol), and phenytoin (Dilantin). Children receiving these medications do not necessarily have a diagnosed condition that necessitates treatment with these drugs. Digitalis (Digoxin) has been given to children with simple functional heart murmurs. Vitamins, magnet therapy, paraffin wax treatments, ultraviolet light treatments, electrophoresis, vacuum therapy of the eyes, and massage therapy are all treatments commonly mentioned in medical abstracts. Parental concerns about side effects are noted during the review process. If a baby appears particularly sluggish or disengaged emotionally, I will often mention that it is possible that the child is on a sedative. We have no long-term studies to answer these concerns scientifically, but in my experience, I have not seen what appears to be long-term effects from any of these treatments.
The diagnosis of "exposure to syphilis" or "Lues disease" is very common on Russian medical reports. Probably at least 20% of my pre-adoption reviews include this diagnosis. Of the Russian children who I have evaluated in my office, I have had no children with active, acute syphilis. I have encountered dozens of children with positive FTA-ABS antibodies which is consistent with possible exposure to syphilis which has been treated or is consistent with persistent transplacental antibody. When a mother has syphilis, her body produces proteins in the blood to combat the bacterial infection. These proteins are called antibodies and the baby can then get those antibodies through the placenta during pregnancy. The antibodies are therefore the mother's antibodies, not the baby's. That is what we mean by transplacental antibody. The Russian medical system has done an excellent job in the management of syphilis in newborn infants. They cannot differentiate exposure from actual infection and they treat all children. Children, who are exposed to mothers with even past syphilis, which has already been treated, are given 28 days of daily intramuscular injections of penicillin. This is more than adequate therapy for congenital syphilis. It is imperative that parents seek confirmation that the child has been treated with penicillin. I think that syphilis is not an alarming diagnosis on a Russian medical, but it is important to follow-up the child once he/she is adopted. Syphilis serology, including an RPR and an FTA-ABS, an eye exam, and a hearing test are advisable for any child with a history of possible congenital syphilis.
Transfusions and HIV, Hepatitis B, C Infection
How to Look at a Video
Transfusions are truly alarming on a medical report. This could mean exposure to Hepatitis B, C, or HIV. I have not personally evaluated any children with HIV infection who have been adopted from abroad, but there have been a few children adopted from Cambodia who were diagnosed with HIV infection. In the past few years there have been a few newly adopted children from China who had positive ELISA tests for HIV, but all of the children had negative PCR tests; this means that their mothers were infected, but they were not infected. All of the HIV infection for international adoption came from Romania during the early 90's when it was discovered that blood transfusions were used routinely in children living in orphanages. Needles were not sterilized and the blood supply was never tested for HIV.
I have a number of children in my practice with Hepatitis B and C infection. In a study published in Pediatrics September 2001, looking at over 500 internationally adopted children who I evaluated in my practice, it was found that 2.6% of children adopted from Russia were carriers of Hepatitis B. Hepatitis C was rare in this population. The children were negative for Hepatitis B and C in Russia and found to be positive after they arrived in the U.S. The lengthy incubation period of up to six months could account for a negative test in Russia and then a positive test upon arrival in the U.S. It must also be understood that the quality of laboratory testing in Russia is not governed by the usual checks and balances that exist in laboratories in the U.S. Some medical abstracts may include lab tests for Hepatitis B and C that are positive and then when retesting is done in Russia, the tests are found to be negative. It would be difficult to rely on these new findings as definitive. All blood tests performed abroad should be repeated when the child is evaluated by their pediatrician in the U.S. See the article on this website about the medical evaluation on arrival.
Rickets is a standard diagnosis on most medical reports as well. We know that most of these children do indeed have rickets that affects the growth of bones and muscle. Rickets is caused by vitamin D deficiency due to poor nutrition and lack of exposure to sunlight; without vitamin D, calcium can't find its way into the developing bone and muscle. Children may have frontal bossing, box-like heads, and bowing of their legs. Once the child has proper nutrition, the bones strengthen and have the capacity for remodeling. Muscles also strengthen. Much of the floppiness (hypotonia) that we see in young children when they first arrive in the U.S. is due to rickets (calcium and vitamin D deficiency). The shape of the head does not change, but the bones of the extremities tend to remodel and strengthen.
Dr. Aronson is available to evaluate your referral. For more information, please visit her website at http://www.orphandoctor.com
Avoiding the Pitfalls
Worth the Wait!
Part One of Two
A realistic look at International Adoption
Practical tips for new adoptive parents
"I think there was nothing random about the events of that day.."