The letter of the doctor from clinic (it is sent 3 months ago)  

Dear girls parents,
This answer is written to you by doctor A.A. Koltsov, the doctor of the
1st childrens department by the request of the professor I.V.
Shvedovchenco. Your photos have been received. I remind you that the
diagnosis of your child is proximal ectromelia of the upper extremities
(in fact it is often called phocomelia what is not quite correct as the
concept of phocomelia also includes other forms of upper extremities
anomalies). This is a very rare pathology, our centre has had the
experience of studying 60 cases of patients with precisely proximal
ectromelia that is the biggest number of the analyzed cases in the
world. The treatment of such patients involves many stages and lasts for
years. The positive aspect in your case is that the child has well
developed salamander hands.
We inform you just about principal points as the more detailed
plan of treatment can be made only after the examination of a concrete
child.
There are possibilities of the surgery treatment and prosthesis
of the child.
On the left, where there is the fragment of the humeral bone, the
fragment of the shoulder-blade can be moved into the position of the
undeveloped humeral bone what will enable to make the extremity longer
and improve the function of the undeveloped elbow joint. This two steps
method with the usage of microsurgery is very serious and radical, it is
elaborated by the professor I.V. Shvedovchenco and does not have
analogues in the world. It takes a few months and requires the
obligatory inpatient treatment. Now we have a few patients with good
results who have been watched 4-10 years. Such patients as a rule do not
need the prosthesis of such a hand.
On the right the situation is more complicated. Here it is
possible:
- the prosthesis of the child beginning with the age of one, mainly for
the cosmetic purpose;
- it is possible just to watch the hand without any surgical operations
as this hand has to function well enough;
- the surgical treatment involving the movement of the blade is possible
but on right this method has to be more discussed as this hand does not
have any elbow joint.

The earliest step is to perform the hand surgery, especially on the
first finger to get a good two sides seizing. Thus, you must write to me
or the professor how the child gets hold of things and how the thumb
functions.
Inform us about the childs development every three months. For the
primary consultations and examinations you are supposed to take your
child to us at the age of 8-10 months. If the hand surgery is required
its one or two steps will be performed exactly in this period. Most
probably we will send you the invitation for hospitalization nearer this
age period. I tell you beforehand that all the examinations in
St. Petersburg must
be paid like for foreigners, so you can partly do them locally: the
ultrasonic scanning of all the body organs, necessarily including the
heart and the cardiologists consultation as well as the geneticists
consultation and the blood test for karyotype (it is done in the medical
genetic centre). If it is difficult for you to do all these examinations
in Moldova you can do them in S. Petersburg.
The examinations to be done only here in St. Petersburg (but not all of
them based in our centre) are: electroneuromiographia, the ultrasonic
scanning of the extremities and blood vessels, the repeated geneticists
consultation, radiography (at the age of 9-12 months).
You must make up a genealogical tree (the maximum number of relatives
from mother and father sides, it is desirable to include not less than
3-4 generations, mentioning any diseases each of them had, particularly
orthopedic and heart ones).
So, write about the hands functioning and think about further
questions.
Respectfully,
Doctor A.A. Koltsov.



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