Twenty-three Years of Clinic Experience
CLAUDE N. LAMBERT, A.B.M.S., M.D. RAYMOND J. PELLICORE, M.D. ROBERT C. HAMILTON , B.S.M.D. JEAN SCIORA, R.N., B.S.P.H.N., R.P.T. ALICE BIRCH
The needs of the juvenile amputee are complex. Results by teams of specialists who made and are still making outstanding contributions, both in service and research, helped influence our conviction that an improved care program for amputees would he more effective in a clinic specifically set up for them. As a result, the Amputee Clinic was started in April of 1952 with 16 patients. Prior to this date the amputee, adult or child, had been seen in our regular orthopedic clinic, and the unending physician may or may not have had a particular interest in the amputee or any special training in amputee management. Sixteen amputees were located from the clinic files, and the special amputee clinic began. Interestingly, two of those called in at that time were bilateral upper-limb amelia patients whom we had followed for some time, hut for whom we had done nothing except encourage them to use their foot-pattern functions, perhaps the smartest thing we could have done.
Organization of the Clinic
In organizing the clinic, the orthopedic surgeon (the senior author) was the chief. In 1955 Dr. Raymond J. Pellicore joined our clinic team, and in 1960 Dr. Robert C. Hamilton became associated with us. The clinic nurses organized the clinic, routed patients, and arranged follow-up appointments, X-rays, and consultations to other services so the clinic proceeded smoothly. A Medical Social worker from the Department of Medical Social Services was concerned when problems in social functioning arose. A secretary, Mrs. Birch, was assigned to the program. Her services proved invaluable to the total program. In addition to correspondence and clinic reports, she kept the records and developed an excellent retrieval system so that accurate results could be maintained. She instituted a program of sending birthday cards and graduation cards to each child on the program. The children greatly appreciated these cards and warmly responded to them in writing or in person.
The Division of Services for Crippled Children of the University of Illinois participated in the program from its inception. A nursing consultant, Mrs. Sciora, was assigned as liaison between the Amputee Clinic and the Division. She interviewed parents of the amputee children, coordinated their clinic visits with visits to prosthetics facilities and other specialty services that might be needed, assisted with the special projects, and made arrangements for prosthetic services as needed for those children eligible for Division assistance.
The need to have the opinions and expertise of qualified prosthetists was recognized, and representatives of certified prosthetics facilities attended the clinic. By University rule we could not favor one over the other, so they were assigned in rotation, and the patient usually remained with the same facility unless there was justified cause to change. This had its good and bad points, but over the years all the facilities have strived for excellence in techniques and services, and there has been quality control because all prostheses were checked out by a therapist. Originally all facilities were represented but, since this seemed a wasteful effort, we now have two prosthetists attend each clinic. They relay any information to the facility involved, and there is excellent communication about recommendations.
An occupational therapist from the Department of Occupational Therapy was assigned to the program to check out upper-limb prostheses and arrange training for the child on an in-patient or out-patient basis depending upon the need and the distance from the clinic. A physical therapist from the Department of Physical Medicine and Rehabilitation was assigned to do the same for the lower-limb amputees. This seems to be common practice throughout the country, but there is no contraindication for other arrangements. It is more important for the therapists to have had additional training and experience with amputees so that adequate training is provided.
A representative of the Division of Vocational Rehabilitation was present as liaison between his agency and the amputee clinic. He was concerned with providing prostheses for patients eligible for that program. At the appropriate time he also handled referrals of children who were interested in trade training or higher education.
The amputee and his family rounded out the team. Opportunity is given for the participating members, including the amputee and his family, to exchange views so that contributions are made for an overall understanding of the patient and his needs, and so that a feasible plan can be developed. Consultative services of the specialty disciplines are available within the University clinic setting as necessary.
Clinics initially were held bimonthly and later were increased to biweekly. At every clinic at least one of the three attending physicians is present. This practice gives continuity of service, and we believe the resulting rapport with the children and their parents has aided us as well, since we have an excellent response from parents when we wish to have the child at a special clinic, even though some live 300 miles away.
Age at Time of Fitting with Prosthesis
Originally, upper-limb amputees had very little available to them. It was felt that there was no hurry to fit a child, and fitting usually was done about the time he started school. Gradually philosophy changed as available armamentaria improved, so that a congenital below-elbow amputee may be fitted with a passive mitt as early as three months of age and by age one may be fitted with a functional prosthesis. The lower-limb congenital amputee is fitted with a prosthesis when he shows signs of attempting to stand and walk; some have been fitted as young as nine months of age. In other words, age of prosthetic fitting is dependent upon the level of motor-skeletal maturation and individual variations. In the case of congenital bilateral lower-limb amelia, a preliminary plastic socket is utilized to aid the child in learning sitting balance, since sitting balance must be mastered before standing balance can he accomplished. We strongly feel that the child should not be "over-gadgeted," particularly with upper-limb prostheses. For this reason, we have advocated that the bilateral above-elbow amputee be fitted unilaterally only, at least until the child is 10 to 12 years of age. With the introduction of externally powered components, we may have to change this impression. In the above-knee amputee, we have fitted suction sockets as early as two years of age. This does not mean that all two-year-olds should be thus fitted, but in suitable cases there is no real contraindication to fitting such a young child with a suction socket.
We were part of the testing group for the child-size APRL hand. The initial response of the children and parents was enthusiastic. There were mechanical problems, it did not stand up under daily use, the glove was easily torn or stained and, actually, the child could not do as much functionally as he could with a hook. Also, when the child outgrew the hand, there was not a larger one available until the child was large enough for the adult size. This has been partially remedied by the introduction of the various size hands now available.
We helped evaluate the PTB prosthesis and its use with the juvenile amputee. Did this type of fitting have any bad effects on the still-present upper-tibial and lower-femoral epiphyseal lines, and thus cause angulation with further growth? X-rays of the knee joints before prosthetic fitting, during further growth and, finally, after the epiphyses had normally closed, failed to show any abnormal growth. Thus, the PTB fitting or one of its variants has become the standard method of fitting. A study also was made of the SACH foot. The children accepted this foot quite well, and it also has become part of the standard fitting.
Should the lower-limb socket for the child be made of wood or plastic? There are arguments on both sides of this question. The "old-time" prosthetists often make a better wood socket, while the younger prosthetists make a better plastic one. Sockets of wood can be enlarged as the child grows, so theoretically longer wear may be obtained. Continued advances in plastics (lighter weight, greater cosmesis, and greater strength) have resulted in wood prostheses being a rarity. With above-knee sockets, the child usually prefers a "free-swinging" knee joint. Various knee-joint controls have been built into the A/K sockets, but the child wants the joint free the short pendulum swings through sufficiently fast to allow maximum speed even if the gait does not look the best. By the time the child is 10 to 12 years of age, a hydraulic knee unit may be indicated.
In 1963 the senior author visited the Amputee Clinic in Muenster, Germany, and there saw the Hepp-Kuhn socket for the short below-elbow amputee, was impressed with it, and on returning home prescribed it for several children. Our experience has been quite interesting. If prescribed as the primary prosthesis (the patient does not know of any different type), the Hepp-Kuhn type of fitting is accepted quite well by both boys and girls. Previous wearers of a prosthesis, however, have a different response. Girls tend to accept this type of fitting, despite the low take-off point of the cable from the figure-9 harness. Their clothes are looser fitting, and they do not seem to require the range of motion at the elbow that the boys do. The boys dislike this fitting because there is definite limitation of motion at the elbow, and the cable binds in their shirt sleeve. However, if the Northwestern supracondylar socket is used, this gives a greater range of motion and is more acceptable. Those juveniles that we have fitted with myoelectric controls, and with the Northwestern socket, have done very well.
We advocate early fitting of the juvenile amputee who has lost a limb as the result of a malignant tumor. In the earlier days of the clinic it was usually six months to one year postamputation, depending upon the type of malignancy,before a prosthesis was ordered. There is no contraindication to the immediate postoperative prosthetic fitting. Since the majority of amputations for tumor are above-knee, hip-disarticulation, or hemipelvectomy, there is little residual shrinkage; and early fitting is easily accomplished. It is now the policy of this clinic to fit these youngsters with prostheses when their stumps are adequate (as with any other acquired amputee), even though there are metastases, as long as they are under care for the metastases. Unless there are extensive metastases at the time of amputation, the child should be provided with a prosthesis when the stump in adequate.
We have had the usual distribution of cases one would see in most juvenile amputee clinics. Originally we saw many more acquired amputees than we did the congenital type. About five years ago this began to change, so that recently we have seen more of the congenital type. We believe the explanation for this observation is that, as a result of the amputee courses and especially the courses devoted to the juvenile amputee, more and more younger doctors are interested in the amputee problem. As a result they are treating the acquired cases in their own local community. This is as it should he. In the case of the congenital anomaly, which may be quite bizarre, the local doctor is still quite willing to refer that particular patient to the amputee clinic for consultation, treatment, and prosthetic fitting.
Our series contained 27 children with proximal femoral focal deficiencies, including seven with bilateral involvement. In our experience with patients having unilateral PFFD, the most widely accepted treatment is ankle disarticulation and fitting with a nonstandard above-knee prosthesis. In many instances knee fusion will give further correction to the flexed, abducted, externally rotated femoral segment, and will allow more functional and cosmetic fitting of the prosthesis. In the case of bilateral PFFD, however, we are strongly opposed to surgical ablation of the feet. Without the surgery, the child can get around at home quite well without any prostheses, and the only disability is a shortness of stature.
Our experience with the Van Nes procedure is somewhat limited, but we feel that we have seen enough cases to warrant some opinions. This procedure should not be done on a very young child. In every such instance the tibia has derotated at least 90 degrees and in some cases the full 180 degrees, so that a secondary derotation osteotomy of the tibia has been necessary. Our best results occurred in two patients, one 13 years old and the other 18 years old at the time of the tibial derotation osteotomy.
It should he stressed that when selective amputation is indicated for the juvenile patient, the amputation should be done as a joint disarticulation rather than as a supra-epiphyseal transverse amputation. We have never seen bony overgrowth after a disarticulation, but we have seen overgrowth many times when the amputation was done through the supra-epiphyseal area. One boy with a congenital anomaly converted to a B/K amputation through the tibia, has required eight revisions of his tibial stump for bony overgrowth. Another patient, a girl with an acquired humeral midshaft amputation for a malignant tumor, has also had eight revisions of the humeral stump for bony overgrowth.
Our experience with externally powered devices has been limited. Two patients were fitted with gas-powered prostheses. There were many problems with the controls, the portable gas tank was rather heavy, and a supply tank had to be keptin the patient's home because the distances to a resource were great. Both patients returned to body-powered fittings.
Several children were fitted with electrically powered prostheses or components: linear actuators, Michigan feeder arm, Michigan electric hook, Ontario Crippled Children's Center coordinated arm, and electric elbow. Mechanical problems, weight, noisiness, or slow speed of the prosthesis has led to rejection in many instances. Two patients fitted with electric elbows felt that there was an improvement in their function; but, when they were ready to be fitted with another prosthesis, they asked for a body-powered one. As continued advances are made in externally powered prostheses, the speed, weight, and noise factors, as well as frequent mechanical difficulties, may be resolved.
The myoelectrically controlled hand for the below-elbow amputee has been accepted quite well but comes in only one size. It has been prescribed for teenagers who have short below-elbow stumps, which allow adequate room in the forearm section for the control unit. The weight and slow speed led to rejection by two children. Another rejected it when he had a growth spurt and his natural hand became much larger than the myoelectric hand.
Surveillance of the Amputee Clinic population for scoliosis continues. This population is a high-risk group for developing scoliosis, and appropriate treatment measures are instituted as the need arises.
Our surgical conversion rate is low (6.2 per cent) for congenital anomalies in the upper limb. The philosophy is to preserve anomalous limbs as much as possible. Nubbins are not removed unless they present such problems as irritation or infection. Other surgeries included deepening of webs, correction of syndactylism, and removal of constriction bahds. For congenital anomalies of the lower limbs,however, we have operated on 71 of 246 involved limbs, or 28.8 per cent.
As of July 1975 our total juvenile caseload was 976 patients, of whom 495, or 50.7 per cent, are congenital and 481, or 49.3 per cent, are acquired. As one would anticipate, 85 per cent are unimembral (376 congenital and 456 acquired), 8.9 per cent are bimembral (63 congenital and 24 acquired), 1.9 per cent are trimembral (19 congenital), and 3.8 per cent are quadrimembral (37 congenital and 1 acquired). The sex distribution is as follows: male 607, or 62.1 per cent (258 congenital and 349 acquired), and female 369, or 37.8 per cent (237 congenital and only 132 acquired).
With the above statistics, we feel that we have had sufficient experience in dealing with the juvenile amputee to have some definite opinions. The child should not he exploited; neither should he be "over-gadgeted" with prostheses that may not be totally functional. Also, do not expect more from an amputee child than you do from a nonamputee child. One must remember the normal growth and development pattern for all children, and then try to treat the amputee according to that pattern.
Rapport with the parents is most essential, since the parents have to make judgments as to permission for surgical corrections, cost of prostheses, and the appearance of the prosthesis. Furthermore, the parents are usually the ones who do the training the therapist teaches the parents, and the parents subsequently teach the child. One must take the time to explain to the parents what we are attempting to accomplish. When parental consent for conversion amputation is not obtainable, the clinic should continue follow-up of the child, accepting the parents decision without prejudice.
Each child needs to be evaluated individually. Any recommendations should be discussed thoroughly with the parents and with the child if he is sufficiently mature. The quality of life ajuvenile amputee can expect depends upon the early care he receives and upon the services provided to help him and his family to cope with his needs. After all, a juvenile amputee is still a child who needs love, understanding, and discipline, just as any other child, but he has an amputation or congenital anomaly which needs appropriate treatment.
The Community Team
The amputee clinic team extends into the community through the community public health nurse (school nurse, visiting nurse, health department nurse) who helps to coordinate the services of the team with those in the community for an integrated approach to the total needs. The local nursing and medical-social consultants of the Division of Services for Crippled Children act as liaison between the clinic and the local public health nurse or social agency in the area.
Parents are encouraged to allow their child to have outside social relationships at the appropriate age just as any other child would. Amputee children need to play with their peers and other children in the neighborhood. Many of these children participate actively in Camp Fire Girls, Scouts, Little Leagues, Pony Leagues, 4-H Clubs, and other activities. Fraternal organizations, particularly the Elks, have assisted with care of some of the children.
Education and Vocational Rehabilitation
Rehabilitation is inextricably intertwined with physical, mental, social, emotional, and vocational aspects of the amputee. The team's services and resources, both within the clinical setting and in the community, are applied to these collective needs. Attendance at regular school is recommended as long as the child is able to achieve. A very small percentage attend schools for the handicapped. Some patients had additional diagnoses, such as hearing loss or mental handicaps, which required special education classes. Many have gone on to higher education with the help of scholarships and assistance from the Division of Vocational Rehabilitation and have responsible positions. Marriage and children, as with the rest of the population, have also been in their experience.
The above discussion indicates the need to evaluate each child individually. The philosophy of this clinic is to fit patients with the most current prosthesis available for the level of amputation, and to provide adequate training in its use. It may be necessary to try various components as well as different types of total prostheses in attempts to obtain optimum cosmesis, comfortable fit, and maximum function. Items which may not be helpful are discarded without patients having to feel guilty for rejecting them, and follow-up continues in the event that technology offers a better fitting.
The team in the hospital/clinic setting keeps open lines of communication with community resources for assistance with the total rehabilitation of the juvenile amputee.
Our goals for the future are to keep abreast of new developments in all areas of amputee rehabilitation, to continue our educational and informational activities, to participate in and promote studies that will help evaluate and improve management of the amputee, to strive for acceptance of the amputee on his own merit and capabilities, at all community levels, and to strive for total rehabilitation of the amputee.