"Contergan Damages" In North Rhine-Westphalia

Dr. Herbig


(Editor's Note: In recent issues of the Inter-Clinic Information Bulletin, Dr. Charles H. Frantz and William A. Tosberg, CP & O, reported that the individual states of West Germany have been assigned the responsibility of establishing treatment centers for the phocomelic children, according to the particular needs and financial resources of the area. The following article by Dr. Herbig offers a first hand report of the plans being made by one of these states - North Rhine-Westphalia, which is composed of the Westphalia province, Lippe and the Northern part of the Rhine province.)

My report is from the District Association, Westfalen-Lippe, and concerns the children with congenital defects of the extremities and the ears, popularly referred to in West Germany as "Contergan Damages".

Status as of September 6, 1962

A total of 359 children, born with severe congenital deformities resulting from administration of the drug thalidomide to their mothers during pregnancy, are registered in our central files. This does not include children with minor deformities, such as thumb and toe defects.

The following breakdown of deformities has been compiled:

Disabilities

1)

Both arms

200

2)

Both legs

14

3)

Both arms and both legs

59

4a)

Both arms and one leg

12

4b)

One arm and both legs

3

5a)

One arm

45

5b)

One leg

14

6)

One arm and one leg

5

7)

Designated only as Phocomelia

7

 

Total:

359

The prosthetic and training measures listed in Table 1 were formulated as a result of our observations and discussions with the leading physicians of the four central agencies.

Group One - Both Arms Affected

The largest group is represented by 200 children with bilateral arm damage but with normal function of the legs. Not all of these will require prosthetic aids, however, since it may be assumed that many will be able to bring their hands together even with shortened arms and that the fingers, even though not always complete, will have a sufficient grasp function.

It is our estimate that only 100 children from this group, and possibly less as time progresses, will require prosthetic aid in some form. It is important to realize that these children will require one prosthesis each for their right and left sides in order to attain bilateral arm control and to secure bilateral grasp with their hands. This means that approximately half of the children in Group One will require about 200 prostheses as their initial supply. In many cases, the type of prosthesis desired has not yet been developed. A considerable number of the children are regarded as "disarticulated" at the shoulder because of their extremely short arm vestiges and lack of muscle function. Mechanical and pneumatic prostheses will have to be selected and carefully tested.

It is desirable that the children be supplied with prostheses at an age when they are beginning to understand "grasping", i.e., in the second year of life. Prostheses should be developed which are suitable for small body sizes and take into consideration a child's limited aptitude for conception. Valid standards for these conditions have not yet been established and, even more important, fitting parts are not yet available.

Theoretical and practical studies must be conducted. Unfortunately, the studies will have to be carried out rapidly since it is necessary that the children be supplied with prostheses and begin training procedures as soon as possible.

When the children become older, they will be fitted with prostheses according to their measurements and increased activities. According to preliminary estimates, a child's prosthesis will have to be replaced five or six times up to the age of 14. In addition, repairs, enlargements and adjustments of the prosthesis will be necessary. The cost of a developed above-elbow prosthesis will be 800 to 1,000 DMThe Deutsche mark is equivalent to slightly less than twenty-five cents in United States currency..

It is our estimate that 95 children will be supplied with their first prostheses on an inpatient basis. Outpatient treatment for a child wearing his first prosthesis is not desirable in most cases because of the type of prosthesis and the training measures which are necessary. The average child wearing his first prosthesis on an inpatient basis requires at least six months of hospitalization. The daily cost for this hospitalization will amount

The parents of a hospitalized child should be present on a regular basis during this inpatient period because it is essential that they become familiar with the workings of the prosthesis. The additional costs for the parents staying in the hospital will be added to the over-all cost for each patient. The parents of a child wearing his first prosthesis will probably have to remain in the hospital for four weeks. Later on, their presence will be required for an eight-day period whenever a checkup, repairs and other necessary functions take place.

Due to our lack of experience, it is difficult for us to calculate the educational requirements of these children. We are assuming, however, that about 60 children wearing prosthetic limbs will attend an institutional school for eight years (which is the obligatory time period for grammar school). It is likely, however, that some of these children will require institutionalized schooling for only the first and second school years. After learning to write and acquiring a foundation of basic knowledge, they will be qualified to attend a regular school.

Group Two - Both Legs Affected

Fourteen children with congenital deformities of the legs but with normal form and function of the arms were registered. Prostheses or vehicles will be necessary for nine of this group and six will require training. The training period will probably encompass about two months on the average, since the children are able to grasp with their hands. The time period will vary, since the children will be wearing different types of prostheses.

Six children will require institutionalized schooling and this number may be increased by those children who would have to travel long distances to reach schools in their own communities. It is hoped, however, that the children in the latter group will return to their homes after gaining strength and travel to schools in their own communities with the aid of self-driven vehicles.

Self-driven vehicles for children are now available commercially. Special studies for their construction will not be necessary, since the vehicle manufacturers are already considering various aspects of the situation, such as the need for special arrangement of the seat.

Group Three - Malformations of Both Arms and Both Legs

Fifty-nine children with malformations of both arms and legs, the group with the mos t severe damages, were also registered. Providing proper care for these children presents many difficult problems. We have estimated that 53 will be supplied with prostheses and various aids, primarily special vehicles.

The most urgent problem now confronting us is the development of appropriate prostheses and vehicles. Many children, even with the aid of prostheses, lack sufficient muscle power in their arm vestiges to propel themselves properly in a wheel chair. Additional power for both prostheses and vehicles must be provided. The use of compressed gas (pneumatic prosthesis), which has already been tested, is indicated for the prostheses, and electrical energy will be the most favorable source of energy for the vehicles.

Electrical vehicles for children are not yet available. The prime difficulty is to secure satisfactory control of the electrical energy and to steer the vehicle adequately by controlled energy. When the proper vehicles become available, the children will provide the manufacturer with valuable hints and suggestions regarding their construction. It is our view that each wheel chair should be fitted individually to serve the needs of the particular patient.

Due to the precise and complicated construction of the electrical vehicles and the necessary training measures, the first group of children to receive the vehicles will be treated on an inpatient basis. The duration of hospitalization in the various special departments will vary, but it is believed that a total hospitalization period of 24 months on the average until school age (six years old)

will be necessary.

Fifty children in this group (and possibly more) will require admittance to institutional schools. At least eight years of institutional schooling will be necessary in order to equal the standards of the regular grammar schools. A child demonstrating talent should be encouraged to develop his intellectual faculties and seek higher education with the hope of entering a profession. This would be very desirable, since only a small percentage of the children will be able to perform manual activities. We have not as yet completely evaluated the problem but are acting on the assumption that eight years of institutional schooling will be required for most of the children.

It has been our experience that prostheses and vehicles have to be refitted a number of times according to the growth of the child's body. The average child requires three new vehicles before concluding his grammar school program.

Groups Four to Seven

The patients in Groups Four-Six do not present any additional new problems. The cost of treatment which we have compiled should be considered primarily in relation to the total sums.

Group Seven will increase the total sum but will not considerably influence the size of the overall figures.

Proposal and Facilities

Consequently, we have compiled the following figures for the District Association, Westfalen-Lippe, an area with a population of 7.4 million: 1) 359 children will require care, 175 on an inpatient basis; and 2) 344 arm and 132 leg prostheses will be necessary for an initial supply.

However, the number of leg prostheses may be altered in view of the fact that some of the 53 children with malformations of both arms and legs will require wheel chairs. If it is necessary to equip 40 children with special vehicles, 80 prostheses would be deducted from the figure of 132 and only 52 leg prostheses would be required.

A total of 175 children will need inpatient prosthetic and training services for an average duration of twelve months. However, they will not require 175 beds immediately. Eighty beds to be occupied continuously for about seven years, will be necessary. Since the additional beds required are not available in the Orthopedic Clinics, four clinics in the District Association, Westfalen Lippe, were selected to provide care. In addition, Dr. Oskar Hepp of Muenster arranged to accept 20 children in his clinic. Plans are now being made to erect a special institute for the care of 40 children, and the 20 patients accepted by Dr. Hepp will be absorbed into the new institute.

A new department will be established at the Orthopedic Clinic of the city hospitals, Dortmund, where it is hoped that 20 children will be admitted. Additional facilities will be created at the Orthopedic Clinic, Institutions of the Internal Mission, Volmarstein, and the Orthopedic Clinic, Institutions of the St. Joseph Society, Caritas Society, Bigge. Special wards will have to be established in both of these clinics since the total number of children cannot be cared for in Muenster and Dortmund alone. Financial matters can be worked out but the recruiting of proper personnel may be more difficult.

The greatest need for places in the special schools for the physically disabled will occur in 1968, when about 100 children will reach the normal age for starting school. Half of the children will be Protestant and half Roman Catholic. The Volmarstein institutions will have to plan for the establishment of four new special school classes and the St. Joseph Society will have to create two classes for their two institutions.

According to available evidence, the total cost of the proposed treatment program will amount to 9,416,000 DM, distributed over a period of about twelve years.

Dr. Herbig is State Physician for the Physically Disabled District Association Westfalen-Lippe Federal Republic of Germany