A Philosophy And Technique Of Child Amputee Management
Robert Warner, M.D.
In the seventeen clinics now cooperating in the Child Amputee Research Program, it is interesting to note the meeting and merging of numerous lines of specialization. Since all clinics have an orthopedic surgeon as chief, there is naturally considerable emphasis on this area of interest. However, at least three of the participating groups also have a strong "pediatric bias" in that a pediatrician is director of the center or project within which the child amputee clinic operates.
As a member of this "pediatrically oriented" minority, it seems appropriate for the Children's Rehabilitation Center, Buffalo, to present the philosophy and principles of child amputee treatment developed in five years of offering services to the handicapped. The so-often used and misused phrases, "total evaluation", "the rehabilitation of the whole child", "the focus on abilities rather than disabilities", should not only be examined, but documented. This will be our aim. We trust that our approach will be of interest to other clinics in the program, whether it be similar or different to their own.
All children begin their total evaluation at an intake interview with the social worker, preferably with both parents present. The social worker examines the family situation, marital relationships, financial problems, and parent-child and sibling relationships. These factors, of course, may either interfere with or facilitate the acceptance and utilization of the intended prostheses. Securing a mother's cooperation in fitting a hook to a young girl, for example, may mean prosthetic acceptance and use (Case #1); while failure to do so may result in limited use or total rejection (Case #2).
The first actual examination of the child is conducted by the pediatrician, who records a detailed history, including familial diseases, pregnancy history, and the milestones of early development. It is hoped that such details will ultimately result in the identification of deleterious prenatal (as in the case of the Thalidomide sleeping pills), hereditary or chromosomal factors.
This is followed by a meticulous physical examination to pinpoint concomitant anomalies, identify and classify presently known or future defined syndromes, and relate them to the historical data. At this stage the pediatrician attempts to develop close ties with the patient and parents for later use in parent counseling and training of the amputee (Case #3). He assumes the responsibility for compiling a checksheet of indicated additional examinations by the other professional members of the team and designates the necessary laboratory work-up. This consists of a blood count, urinalysis, tuberculin test, along with X-rays of the stump and opposite extremity for comparison as a normal routine in all cases, plus any indicated additional examinations, such as EEG's, chest or skull X-rays, blood chemistries, etc.
Other specialists are called in as needed-dentist, ophthalmologist, neurologist, psychiatrist, all of whom are part of the center's overall team, or consultants in ENT, urology, cardiology, etc., who are members of the hospital staff. For most patients, a psychological examination is given next. We wish to establish the developmental status of each patient in order to determine just how "young" a child can profitably be fitted with a functioning knee, an "active" hook, a locking elbow unit, or similar devices.
It has been our experience that mental age, along with motor development quotient, is much more meaningful than mere chronological existence outside the womb, as measured in months or years (Cases #4 and #5). In pre-school and older amputees, whether post traumatic or congenital, psychological nuances concerning these children's Concepts of themselves and their handicap may be as important in their acceptance of a limb as its fit or function (Cases #3, #6 and #7).
In accordance with the usual procedures, the occupational therapists examine the upper extremity amputees for their ability to perform the activities of daily living -eating, dressing, and writing; the physical therapists, especially in lower extremities, determine condition of stump, limitation of motion, contractures, and muscle power, all under the careful eye of the physiatrist, who evaluates the stump and prescribes the proper bandaging and preparatory exercises.
Finally, the team, composed of the above plus the orthopedist as chief, along with the prosthetist and the County Health Department physical therapist, meeting as a unit, prescribe a proper prosthesis and decide the length and type of training needed, and whether the child can be separated from the mother as an in-patient or receive training as an out-patient (accompanied by the mother for daily or bi-daily therapy sessions).
Immediately following the professional conference, the social worker and the pediatrician confer with the parents and discuss the entire evaluation-physical, psychological and educational, as well as laboratory findings. The type of prosthesis prescribed is explained and illustrated; the discussion includes discipline, feeding problems, and attitudes, understanding and accepting the child and his problem.
Every attempt is made to answer the parents' questions sympathetically but honestly and in terms they can both understand and accept. In the cases of older children, the parents are seen first, usually alone, then the patient is seen with the parents or alone, at his or her discretion. This is a time when teen-agers frequently express dissatisfaction with parental handling. Then in joint conference, a middle road of compromise is often suggested or the adolescent is helped to understand his parents' attitudes or vice versa (Cases #3, #6, and #7).
It is often found that one parental conference is not sufficient and the social worker requires repeated contacts with the parents to reinforce what was discussed at the initial conference. Sometimes the parents are ahead of the team and ready to proceed before we believe the child is ready (Case #8).
Role of Counselor
The Educational-Vocational Counsels is a unique member of the team. She is acquainted with various special classes for the mentally or physically handicapped and makes a school recommendation at the conference with the other team members. Our objective is to return all possible cases to regular school classes and provide pre-vocational and vocational counseling, especiall in older patients (Case #9). With this in mind, the Counselor visits local schools and confers with teachers, principals, and guidance counselors. Letters are used in more distant areas. In all younger cases, the teacher is urged to have the child show his prosthesis to the class and have classmates touch it and understand its function. This is done so that the other children will not fear the prosthesis in ignorance and prejudice, but will accept it in familiarity and understanding.
On a number of occasions, the school nurse, through the Public Health Nurse of the team and her counterpart in the field, or the county physical therapist, assists in this demonstration and familiarization in both the school and the neighborhood. The later, she used the prosthesis well without a cane, attended dances, obtained good grades, rode horseback well (Figure 3), and was elected a class officer and a member of the girls' swimming ballet team. She was also able to establish an improved relationship with her mother, who is now proud of her accomplishments.
Case #4. J.A.T. Right above-elbow, congenital
At the age of two years and six months, she was initially considered "too young" to learn active use of both hook and elbow lock. However, because of the child's brightness (I.Q. 124), the team decided to try both. In 48 hours as an in-patient, she learned to master elbow lock and hook operation. The child went on to be a good limb wearer and was one of the first candidates for the child-size APRL-Sierra right hand study.
Case #5. R.C. Right below-elbow, congenital (absence of hand).
This patient was fitted with a "passive" 12P hook at the age of seven months and was a good limb wearer by 10 1/2 months. At 16 months, the team denied a request by the child's mother for an operating hook. However, after an appeal by the social worker and the pediatrician, a larger, fully functional prosthesis with 12P hook was provided at 17 months. Twelve hours of training was given. A note by the occupational therapist reads: "Very good result, would be very unhappy without it-opening good when he wants to get something." R.C. is a good limb wearer and uses the prosthesis eagerly.
Case #6. R.Z. Left below-elbow.
This boy was 15 years old and an Eagle Scout when he came to us. His pockets were crammed with newspaper clippings, publicizing his ability to function without an arm. All clothing was cut off to expose the stump and he said he did not want or need a prosthesis. He had been seen at an Amputee Center in a neighboring state at the age of seven years, where cine-plasty had been recommended. This recommendation revolted his family and they set out to prove that it was "unnecessary."
The psychologist, with the use of personality and projective studies, showed that the boy's facade was false and that he was deeply unhappy and insecure. He gradually broke down at the parent conference and admitted to the pediatrician that he hated not having a hand. He was given an APRL hand and three weeks of training. He now uses his prosthesis extensively and has made a successful adjustment in college.
Case #7. D.A.G. Left below-elbow congenital.
The patient was a 15 1/2-year-old girl, obese, somewhat unprepossessing, who was followed at the State Orthopedic Clinic. She was a good hook wearer from ages 9 to 12, at which time she outgrew the limb. The Clinic Doctor (without consultation with her or her family) gave her a hand and she found that she could do nothing with it. She became depressed, withdrew from her friends and family, and refused to wear any limb or to go out socially.
At the evaluation, she admitted to the occupational therapist and doctor that she "hated" the hand and that it was "heavy" and "useless." In a separate conference, she told the pediatrician that she would "decide" whether she wanted a prosthesis if her parents "had nothing to do with it." Otherwise, she refused to consider the matter. The parents acceded to her request.
Four days later, D.A.G. wrote a pleasant letter requesting a hook and training on an in-patient basis at the next school holiday. After two weeks in-patient training and a self-imposed (medically approved) diet, she lost eight pounds, became a very adept and enthusiastic hook wearer, eager to re-use it in school. The parents were pleased at the change in their daughter and willingly accepted her with the "hook."
Case #8. R.W. Left above-elbow, congenital.
This patient was a bright boy, first seen at 18 months. He was started with an Infant Passive Hand after the team voted against issuing him a wafer hook. The boy was so attached to his hand that when it was pinched he said "ouch", and when it was injured he insisted that band aids and adhesive tape be put on it. At the age of just over two years, the father felt that the child should definitely have a functional prosthesis, but the team disagreed.
At two years and two months of age, the parents reported that he seemed to be using his prosthesis less, that they wanted him to have a hook, and felt that the boy also wanted a hook that he could use. When the team agreed, the family said, "We finally put it across." Training with a functional prosthesis resulted in a good limb wearer who will not leave his bedroom without his arm.
Case #9. M.D. Right above-elbow (plus loss of much of biceps muscle, freezing of elbow, both bones of forearm growing through stump following electrical burns-slipped while climbing signal on railroad property).
A male of 13 years and nine months, this patient also had amputation of the left fifth digit with keloid formation and little use of his left hand. He was a disinterested boy going with "the wrong crowd", who did not know his school grades because he had "not bothered to look at the report card." He was supplied with a standard prosthesis and training (and surgery to his left hand). Repeated counseling sessions, often stormy and difficult, over a period of three years led to the following most recent school report:
"[M.D.] has been rated good or better by all his teachers in: seriousness of purpose, understanding, initiative, and cooperation, leadership, responsibility and emotional stability...he has also been a member of our inter-scholastic track team and elected a class officer."
Robert Warner is Medical Director, Children's Rehabilitation Center, Buffalo, New York