Integration of Pediatric Amputees and Their Parents with an Adult Amputee Support Group
The Amputee Clinic at James Lawrence Kernan Hospital has existed for 33 years. For the last sixteen Scott Decker, MD has been Medical Director, and William Neill, PT has been organizing us as Director of Physical Therapy since the establishment of the clinic. I have attended the clinic for a decade, with the title of Patient Services Coordinator, acting in the capacity of social worker.
At least ten patients appear at each clinic. It is difficult to offer adequate emotional support to them in the limited clinic time. This is particularly difficult for new parents bringing children with congenital amputations. They have many questions and could benefit from ongoing support and counselling.
About seven years ago, the first move was made to form a support group. The concept at that time was that the group should be for adults with peer counselling. When the prospect was discussed among the clinic team, a representative of a prosthetic company strongly discouraged the idea, warning us that such groups tended to turn into "gripe sessions", where patients made unfavorable comparisons. The individual most interested in starting the group was a very well-functioning person with a below-knee amputation. I could imagine amputees with numerous problems meeting this man, who has a very upbeat personality, and feeling discouraged because they would never be able to function as well as he does. The idea was dropped.
A few years later, a social worker at the hospital started a group for parents of patients with all types of orthopedic disabilities, including amputation. A key member was the mother of a bilateral amputee, Diane Burkom, who addressed this Association when it met in Baltimore five years ago. This woman is intelligent, energetic, and has dealt extraordinarily well with her son's disability. Unfortunately, for many reasons, the parents' group failed about three years ago.
The issue was raised again by an amputee attending the clinic. No formal amputee support group operated in Maryland. All the same advantages and disadvantages were reevaluated. I decided that, in spite of the threat of torpedoes, I would proceed full speed. The composition of the group was considered: Should we limit membership to any particular age or clinical category? Should we confine it to amputees? I concluded that it would be better to open it to amputees of all ages and their families. People seem to benefit from just seeing other individuals with the same problems, regardless of age.
Because the amputee clinic has been active for so long, many patients are very well know to us. This enabled me to list people who I felt either would be interested in being part of a group, or who have executive ability. I identified fifty names, of all ages, including parents of infants and children. About forty came to the first meeting. After I introduced people to one another and talked about the benefits of forming a group, six volunteered to form an executive committee. The below-knee amputee who had wanted to start the group originally became president.
Benefits of incorporating all ages into the group were already apparent. One reason the parents' group had failed was because it had insufficient members. This was no longer a problem. Monthly meetings have averaged over thirty in attendance, with occasional participation by fifty. Our mailing list has 150 names.
I arranged for our Director of Child Life to be present at the first meeting, and an unexpected benefit was that some parents brought their non-amputee children to the meeting. All the children played together, under the guidance of our Child Life therapist, unconsciously learning from each other and accepting each others' limitations. Parents formed their own nucleus within the group, fostering friendships outside the group.
Stigma is a difficult issue with which parents of amputees have to contend. Even in the group, I observed that parents of babies try to hide the defect. One mother tried to train her infant to hold the arm with the absent hand behind his back as he lay in her arms.
The hope is that, by being in a social situation with amputees who are dealing comfortably with their loss, parents will be open to learning ways to manage negative reactions. The effect on new parents observing how a parent like Diane Burkom handles her son's disability, or watching an adult amputee functioning successfully in the world, is incalculable.
Another aspect of stigma is illustrated by an 8-year-old girl, an above-knee amputee since infancy. She often chose not to wear her prosthesis in public, especially on days when, as she said, she was just "too full of energy" to have it encumber her. Her parents would rather she did wear it, but tolerate her not donning it. At the meetings it is enlightening to observe her dancing unselfconsciously on her one leg-a living example that stigma is only what we ourselves make of it.
Besides meeting for support, the group has organized projects, the most notable of which was a Christmas party, attended by young and old, where we collected used prosthetic components for an organization which was shipping them to Central America for use by amputees there. We got the attention of the press by calling the endeavor "Arms for Nicaragua". The newspaper, radio, and two television stations covered our Christmas party!
The entire board completed anemand from area hospitals. We have had requests for visits from ten hospitals, as well as many individual enquiries.
The group is now launched successfully, one of its strengths being diversity of ages and types of amputations. New members are constantly recruited by two representatives of the group who attend every clinic at the hospital. We are investigating the possibility of extending the service to other clinics in the area.
We have been very fortunate in our clinic team, whose wisdom and imagination saw the potential of such a group. They have participated in programs, attended meetings individually, and gone to bat for us when we have needed help from the administration.
Benefits to the morale of our amputees are self-evident. Even when a person is in the most intense phase of anger and grief over their own or their child's amputation, the possibility of eventually helping another person in the same situation offers them hope.
James Lawrence Kernan Hospital, 2200 North Forest Park Avenue, Baltimore, MD 21207