The Phocomelic Problem In West Germany
William A. Tosberg, CPO
(Editor's Note: In August and September of 1962, Dr. Charles H. Frantz, Dr. Arthur J. Lesser and William A. Tosberg visited several European countries to observe the overseas phocomelic problem at first hand. Each member of the delegation is preparing a comprehensive report of his observations to be published in later issues of the Inter-Clinic Information Bulletin. However, in an interview with Mr. Bursky of our editorial staff, Mr. Tosberg has described the highlights of his experiences in West Germany and these are presented in the following article.)
On August 24 of this year, I departed for Europe to secure first-hand information on the recent upsurge of severe congenital malformations which have occurred in great numbers in West Germany and elsewhere. My trip, which was under the auspices of the National Institutes of Health, took me to Copenhagen, Hamburg, Muen-ster and Karlsruhe. In Muenster, I crossed paths with Dr. Charles H. Frantz, Chairman of the Subcommittee on Children's Prosthetics Problems; and Dr. Arthur J. Lesser, Director of the Division of Health Services, United States Department of Health, Education and Welfare, who were also in Europe to obtain facts on the phocomelic problem.
The trip was both informative and rewarding and I am reporting my observations in the belief that they will be of interest to my colleagues in the fields of prosthetics, orthopedic surgery and pediatrics. The startling rise in the number of children born with phocomelia, particularly in West Germany, has aroused international concern and attention and it is imperative that those of us in the prosthetic and orthopedic fields keep abreast of the latest developments.
In Copenhagen, I conferred with Dr. Knud Jansen, Chairman of the Committee on Prostheses, Braces and Technical Aids, which is part of the International Society for Rehabilitation of the Disabled. Dr. Jansen plans to include discussion of the phocomelic problem at the Society's International Congress at Copenhagen in June, 1963.
In Karlsruhe, I attended a "Therapy Week" conference which attracted specialists in all fields of medicine related to therapy. The phocomelic problem was discussed in great detail at the conference. In Hamburg, I met with Dr. Widukind Lenz, research scientist in human eugenics at Hamburg University, who helped to uncover the relationship between the upsurge in congenital anomalies and the drug thalidomide.
In Muenster, I visited the Orthopedic University Clinic and Polyclinic, conferred with Dr. Oscar Hepp and Dr. Goetz-Gerd Kuhn, and observed a number of severely deformed children (see Fig. 1 ). I learned that an estimated 5,000 children were born in West Germany with congenital malformations attributable to administration of thalidomide and that 2,500 of this number survived. The surviving group included cases of proximal femoral focal deficiency, hemimelia, paraxial radial hemimelia, and amelia as well as phocomelia, but a comprehensive breakdown of the cases is not available at the present.
Dr. Hepp told me that only one out of 60 or 70 of the surviving group is so severely deformed as to require permanent hospitalization. He believes that the others, with proper rehabilitation, prosthetic fitting and training, will be able to lead reasonably normal lives.
Of the 2,500 cases, ten percent are now hospitalized in various parts of West Germany. (Most of these children have been placed in hospitals near their home communities.) The remaining ninety percent are living at home and undergoing out-patient treatment. The hospitalized children are the ones with severe malformations, many with all four extremities affected and some with related mental problems. They are being treated in the regular orthopedic and pediatric divisions of city and university hospitals. The present plan is to try to ameliorate the effect of their deformities by therapeutic procedures and prepare them for ultimate prosthetic fitting. A definite pattern of fitting has not yet been established -- few of the children, in fact, have been fitted -- although several have been taken to Heidelberg and fitted with the Heidelberg Arm (see Fig. 2 ).
The ten "lander" (states) of West Germany have been assigned the responsibility of establishing treatment centers for the phocomelia victims, according to the particular needs and financial requirements of the area. Overall administrative responsibility for the program will rest with the Ministry of Health in the West German Federal Government at Bonn. The severely deformed patients will be transferred to the treatment centers as they are established, and those now at home will be brought to the centers for fitting, training and periodic check-ups.
The first treatment center created specifically for phocomelia patients will open at Hanover in January, 1963. The center will contain thirty beds. Special treatment centers will also be established in Muenster, Cologne, Heidelberg, Frankfurt, Debsted and other areas.
A "two-bed" concept of training is now being developed. The infant and mother will be kept together as much as possible at the treatment center and the mother will be given every opportunity to learn and understand the various phases of the rehabilitation program. This appears to be a most significant development since, from my own experience at the Institute of Physical Medicine and Rehabilitation, I am acutely aware of the importance of parental reactions. I have encountered any number of instances where a mother rejected a prosthesis and wrecked a child's chances for a successful fitting. The "two-bed" concept is an obvious step in the right direction.
An organization of parents of phocomelic children has also been formed. The group will strive to improve the general care and welfare of the children and it is also hoped that the united action of parents will help to eliminate the fear-psychology which has enveloped some of them.
When the children reach normal school age, the vast majority will be sent to regular schools. They will attend special classes for the disabled but the classes will be conducted in the same building with the rest of the student body. In this way, the deformed children will learn to mingle and communicate with other young people as part of their assimilation into the framework of society.
Four prosthetic research centers will be established during the coming months. The centers will be located at Muenster, Cologne, Heidelberg and Frankfurt. Skilled prosthetists and technicians will be hired, trained and developed to deal with the unique problems presented by the phocomelia patients. The research centers may be financed directly by the Federal Government.
The growth and development of prosthetics research in West Germany and other nations has been greatly accelerated as a result of the phocomelic problem. "Prosthetics must move forward", Dr. Hepp told me. "The Heidelberg Arm is now regarded as very useful in the fitting of severe bilateral anomalies. However, I am certain that both the Heidelberg Arm and other possible power mechanisms will undergo intensive development in the next few years. We hope to contribute to this development, particularly in the electronic field. I have already hired an electronics engineer, a pneumatic engineer and a hydraulic engineer to initiate activities". The end product which Dr. Hepp hopes to achieve may be a forerunner of the prosthesis of the future -- a combination of an externally powered prosthesis and a muscle powered prosthesis.
Dr. Hepp, Dr. Kuhn and other German scientists are greatly impressed by American terminal devices, an area in which they have done comparatively little work. It is entirely possible that some of the phocomelic children may ultimately be fitted with American P-12 hooks.
The basic theme of the West German authorities is twofold: (1) education of the public as to the actual and complete facts of the situation; and (2) training of the children and their parents at an early stage.
I returned to the United States on September 6th, profoundly impressed by the technical skill of the West Germans and their efforts to handle the problem intelligently and realistically, but at the same time I recognized that prosthetics research faces a great and challenging task in the years ahead. There is still very much to be done.
William Tosberg is Technical Director, Prosthetics Services Institute of Physical Medicine and Rehabilitation New York University Medical Center