I am adopting a 3 ½-year-old child from Russia. From a parent’s point of view, this child looks pretty normal, yet his medical record is full of scary diagnoses. Can you explain what these diagnoses actually mean? Or can they just be dismissed as just non-relevant medical jargon?
I must agree with you. There have been many times when I viewed a video and the child looks great, yet when I review the medical records, they are full of medical diagnoses that sometimes scare me as a physician. This is the reason that I initially became interested in children who are internationally adopted.
I remember the first international adoption evaluation that I performed for a child who came from Russia. A prospective adoptive mother came to my General Pediatric office very happy that she had received a referral of this beautiful 14-month-old boy. She presented me with the child’s medical records, which were laden with words like “perinatal encephalopathy,” “pyramidal insufficiency,” and “vegeto-vascular syndrome.” After reviewing the case, I felt terrible because I thought that this child, according to Western Medical teaching, may have been diagnosed with cerebral palsy, and how was I going to tell this happy woman that this child was suspected of having severe brain damage.
It was only after I reviewed the video that I had realized that this child does not look like a cerebral palsy patient at all and nothing on the record really made sense. I told the mother that, although this child looked very good on the video in terms of developmental milestones, I found it hard to ignore the term “perinatal encephalopathy.”
I was confused and I let her know that. She told me not to worry because she felt that this little boy was meant to be hers and that all international adoptions are generally a leap of faith. I was dumfounded by these records, so I just used my medical reasoning and my gut feeling to say that the child looked good despite what the records actually stated. I am happy to say that little Christian is now eight years old and doing great– walking, talking, and running, just like all the little boys in his mainstream classroom.
In this article I would like to try to explain some of the common diagnoses found on the Russian medical records and what they actually mean. I would like to reiterate, however, that even though these terms appear commonly on many of the abstracts, they should not be easily dismissed just because they are common. Each child should have the records and video evaluated by a doctor with experience in international adoption.
An international adoption doctor’s role is not to tell you which child to adopt or not to adopt. That is an unrealistic expectation, given the fact that they have not been able to physically examine the child. An international adoption doctor’s role is more to educate the adoptive families about any risks associated with a particular child. The physician should explain all diagnoses and examine the video for milestones and any strange facial features. These things need to be explained in simple terms to the prospective adoptive parents and all questions need to be answered. Once the family has a thorough understanding of the child’s medical condition, they can then take a calculated leap of faith.
Common terms listed on the medical records of international children (especially in Russia):
1) Abnormal chordae (trabeculae):
Extra muscle tissue in the wall of the heart, usually the left ventricle. This feature is found with the help of an echocardiogram of the heart. This is an “incidental finding”; it does not cause any symptoms or medical disease.
2) Intestinal Dysbacteriosis:
Loose or diarrheal stool following lack of breast-feeding, illness, or a course of antibiotics. This occurs secondary to changes in the normal bacterial flora of the intestine. It is treated first with an antibiotic to decontaminate the gastrointestinal tract and then with ferments and enzymes similar to our treatment with lactase (milk sugar enzyme) or lactobacillus.
3) Hyperexcitability (neuro-excitability, neuro-reflex irritability) syndrome:
Similar to muscular dystonia, but diagnosed within the first three months of life when the infant has marked reactions to stimuli such as being moved or disturbed, especially if tremors, increased newborn reflexes, a trembling chin, or frequent belching is present. It may result in movement disorder at an older age. In the United States, we do not make mention of this and just state that they are normal newborn reflexes.
4) Hypertension-hydrocephalic syndrome:
Clinical diagnosis based on one or more criteria alone or in combination:
- increased muscle tone brisk reflexes
- firm fontanel (soft spot)
- pulsation of fontanel
- large head circumference
- dilated blood vessels over the scalp
- prominent or bulging eyes
- “sundowning” of the eyes
- bluish discoloration over the bridge of the nose
This diagnosis may be confirmed by an ultrasound of the brain looking for dilation of the ventricles. Medical pathology occurs when these ventricles become enlarged because of accumulation of this fluid in the brain, thus causing a very large head. Considered in most children to be a transient condition secondary to the birth process. It can be treated with certain vitamins, diuretics, and other drugs to improve blood flow to the brain. Surgical shunting is very rare, but if it is required then true brain pathology exists. The condition is considered to be “subcompensated” when the child still has some minor signs or symptoms, but is doing okay. It is “compensated” when there are no clinical signs except perhaps for a head slightly out of proportion with the rest of the body; at this point the child is expected to be normal.
Short stature or growth delay without any other medical problems, usually genetic or “constitutional.” Also used to refer to under-development of any organ such as a limb, testis, an eye, etc.
Weight lower than expected for age. May be further described as “mesosomatic” or “microsomatic,” “harmonious” or “dysharmonious”– depending on changes from previous growth and the relationship to the height and chest circumference.
7) Hypoxia of the newborn:
Lack of oxygen at or before delivery, usually diagnosed if it was a difficult pregnancy, labor, or delivery, or if the baby needed resuscitation at birth, or if there was any specific abnormalities are noted in the placenta or afterbirth. When severe oxygen deprivation occurred, words like “asphyxia” are used. “Prenatal hypoxia” is a vague term, and is sometimes linked with the wording “non-specific intrauterine infection” to explain away low weight or asymmetric reflexes or tone in a full-term baby.
8) Hypoxic (metabolic) cardiopathy:
A clinical diagnosis sometimes confirmed by “metabolic changes in the EKG.” This refers to any number of mild changes in circulation such as perioral cyanosis (blueness around the lips or nose), irregular heartbeat, mottled skin, anemia, or rickets. This is a transient condition which resolves when the underlying condition is treated. Term may be used for more serious conditions such as myocarditis or infection of the heart.
9) Increased seizure readiness syndrome:
When a child has an evaluation for suspected seizures or some other problem, an EEG of the brain may be done. The term is used to describe the finding of an abnormal focus on the EEG or when a child has increased muscle tone not related to cerebral palsy. Usually no treatment is given.
10) Minimal brain dysfunction:
Used variably to describe transient neurologic conditions such as abnormalities in the reflexes or “soft” neurologic signs such as hyperactivity or short attention span. It may mean what we in the United States diagnose as ADHD. If there are any suspicious facial features of fetal alcohol syndrome, this associated diagnosis will make FAS more likely.
11) Movement (motor) disorder:
This is a result of muscular dystonia, usually manifested as a delay in gross motor skills. For example, a 10-month-old who cannot crawl has a movement disorder. This is not considered a serious diagnosis in contrast to more severe forms, pyramidal insufficiency or spastic tetraparesis. This is a diagnosis that is used when a child is not “perfect,” but no other diagnosis can be made. It is a mild developmental delay.
12) Muscular dystonia:
Muscle tone is considered to be dependent on the emotional condition of the baby. A normal child should be calm with appropriate relaxed tones. Muscular dystonia is present when the tone is very high (jittery or irritable) or is labile (changes rapidly). This is not a permanent condition, but changes over brief time periods (an hour) as the baby’s state changes (from sleepy to alert, etc.)
Functional mental impairment, meaning the person is not operating at the expected intellectual level. This is usually not diagnosed until older than four years. It may be caused by many different conditions such as genetic disease, head trauma, infection, etc. Unfortunately, it spans from minimal learning disability to severe mental retardation.
14) Perinatal (prenatal) encephalopathy:
(Variably translated “perinatal lesion or affectation of the central nervous system,” “encephalopathia,” and many others.) This is a diagnosis that is given to a newborn when one or more risk factors are present in either the medical history of the mother or the baby, that may allow for a poor neurological outcome. But this does not necessarily mean that every baby will have a poor outcome. It is similar to the rule-out diagnosis that we make in the United States.
Maternal risk factors:
- Lack of known medical history
- Drug, alcohol, or cigarette use
- No prenatal care
- Past miscarriages, abortions, or premature deliveries
- Very young or old maternal age
- High number pregnancy
- Chronic health problems
- Poor social situation
- Difficult or complicated delivery
- Abnormal placenta
- Low Apgar scores
- Abnormal muscle tone or reflexes
- Irritability or depression
- Poor suck/feeding problems
- Abnormal head circumference
- Congenital abnormalities
- Genetic conditions
- Abnormal ultrasound of brain or other parts of the body
- Intrauterine or perinatal infections
- Abnormal prenatal growth
- Abnormal laboratory tests
15) Prematurity Classification:
Determined by maternal history or a scoring system such as the Dubowitz (also used in North America). Described in stage or degree:
|Stage or degree||Gestational Age||Weight|
|1||36-37 weeks||2001-2500 grams|
|2||32-35 weeks||1501-2000 grains|
|3||28-31 weeks||1000-1500 grams|
|4||< 28 weeks||< 1000 grams|
16) Psycho-affective respiratory attack:
Breath-holding spells. These are of no medical consequence. One could find this by simply going to Toys R Us and looking at any child who did not get the toy that he or she wanted. He or she screams and cries until they turn blue and then pass out for a second or two. Parents fear that they were having a seizure, but they actually were not.
17) Pyramidal insufficiency:
Infants are considered to be at risk of cerebral palsy because of adverse perinatal history (eg, extreme prematurity or low birth weight), or because of abnormal physical examination (eg, increased tone or reflexes, asymmetry of reflexes, delayed development). Usually, a child cannot be confirmed as having cerebral palsy until after 12 months of age because some children will improve before then. Usually is apparent by six months of age, and if it is going to resolve, it disappears completely by the age of one.
Rickets, bone disease due to lack of vitamin D.
|Stage or degree||Time to develop||Clinical signs|
|1||Weeks||Minimal or nothing at all.|
|2||2-3 months||Delayed development due to bone pain and weakness|
|3||Many months||Marked developmental delay, bone deformation, abnormal skull shape or size, poor muscle tone an strength.|
19) Spastic tetraparesis:
This is a more serious form of movement disorder in children less than 12 months of age, which ranges from mild to severe and involves all four limbs. In a worst case scenario, the child barely moves at all. If treatment (massage and physical therapy) is started early, this is usually corrected very easily, but some children have persistent neurological findings. If you see this diagnosis on a record, you should be very suspicious of cerebral palsy. This is where the video is important.
20) Stage of condition:
The progression of a disease
- Recuperation or rehabilitation: Improving, but still requiring treatment.
- Residual: Almost recovered, but signs or symptoms not completely resolved: expected to be healthy. Also used for late or permanent results such as scar or stroke.
- Recovery Condition: Illness completely resolved.
- Compensated : Abnormal, but stable.
- Subcompensated: Abnormal, clinically unstable, may deteriorate.
The information and advice provided is intended to be general information, NOT advice on how to deal with a particular child’s situation or problem. If your child has a specific problem, you need to ask your pediatrician about it. Only after a careful history and physical exam can a medical diagnosis and treatment plan be made. This website does not constitute a physician-patient relationship.