Thalidomide Children Learn To Realize Their Potential
Reprinted with permission from Medical Tribune, Vol. 7, No. 4, Jan. 8-9, 1966.
Discussion of the thalidomide disaster, with its evocations of helplessness and despair, is out of place at the Schlier-bach Home for the Handicapped, on the outskirts of Heidelberg, West Germany. The children are five and six years old now. In most respects they are like others of their age and are preparing for the future.
Noises from the kindergarten, swimming pool, and playground predominate at Schlierbach, where 24 phocornelic children are currently learning to develop their physical, mental, and psychic qualities to the highest possible extent. The idea of what is possible for them is being constantly enlarged. A team including physicians, nurses, psychologists, teachers, occupational therapists, and physical therapists works with a confidence based on the successful treatment of more than 60 such children and of several hundred adult amputees.
Key elements are the training methods and prosthetic devices designed by or under the supervision of Dr. Ernst Marquardt, of the Orthopedic Clinic, University of Heidelberg. A number of circumstances conspired to make of Dr. Marquardt the right man in the right place at the right time.
Two years before the first thalidomide victims were born, the case of a five-year-old armless girl was referred to Dr. Marquardt by a New Jersey physician (Dr. Henry Kessler, director of the Kessler Institute, Orange, N. J.) for the fitting of a pneumatic prosthesis of the type that had been used at Heidelberg for many adult amputees.
Dr. Marquardt's experience with the American girl was invaluable in preparing for the unprecedented flood of cases that started in 1961.
By October, 1962, as reported in Medical Tribune, eight children suffering from the characteristic thalidomide-induced phocomelia had been fitted with the Heidelberg prosthesis and had been trained in its use. Today, in addition to the 60 already discharged and the 24 under treatment, 70 others are awaiting admission. The Home also cares for 326 outpatients, including both children and adults.
Despite the proved value of the prosthesis, Dr. Marquardt places primary emphasis on the training of his patients' bodies and minds, on the development of confidence based on their own proved capacities .
"Our main purpose," he told Medical Tribune, "is to make the children independent. In achieving this, our main problem is not with the children but with their parents. Some of the children leave here able to feed themselves, dress themselves, go to the toilet, draw pictures, and play games. Their parents bring them back and say they can't use the prosthesis. We have to show the parents what their children are capable of. It is hard for some of them to believe it. A major part of our work is training parents, convincing Them they must make demands on the children.
"Our methods have been developed and improved since 1961, but the basic principles are still the same. We start with body training, giving particular attention to the feet, which are much more important than any prosthesis. In each individual, we try to train all functions to the highest possible degree.
"As a rule, we start with passive prostheses in the second year of life and begin to elaborate the mechanism, externally powered by liquid carbon dioxide, between the ages of two and a half and three.
"In bilateral amelia and bilateral complete phocomelia we start with the fitting of a pneumatic paw-hand prosthesis. In patients with well-developed shoulders, a twin traction valve system operating through a cylinder and pistons and Bowden cables controls the coupled medial rotation of both arms by a forward movement of the shoulders. This, with elbows bent at right angles, allows a gripping movement of the two simple baby paw hands. When the shoulders are moved backwards the other half of the twin valve acts and produces lateral rotation, thereby opening the grip.
"In cases with hypoplastic shoulders a tapping key valve is fitted with an elongated stirrup. This stirrup is fitted to one shoulder. Forward movement of the shoulder causes coupled medial rotation, and backward movement causes coupled lateral rotation by the appropriate touching of the valve points."
Emphasizing that the type and degree of sophistication of the prosthesis depends upon individual factors, including the type of malformation, Dr. Marquardt said that the next important stage is commonly reached at the age of five, with the fitting of a pneumatic elbow. Increasingly, bilateral fittings are provided, with a wrist rotation unit on the dominant side and upper-arm rotation on the weaker side.
"The most important new development in cases of phocomelia and phocomelic ectro-melia," he said, "is that the prosthetic hand is controlled by the malformed hand. The passively controlled shoulder joint of this prosthesis is fitted eccentrically. We developed it at first as a passive locking joint but have now developed a pneumatically lockable shoulder Joint for small children which can be worked by a twofold pressure valve. The disk or cone-shaped brake allows free swinging of the arm when unlocked, and with suitable use of the valve an increasing braking action to complete locking."