THE TRAUMATIC TEENAGE NON-ENGLISH SPEAKING QUADRIMEMBRAL AMPUTEE CHALLENGE
Tamara Carr, BS, CPO Toni Thompson, MA OTS/L
When 15 year old Rene flew his kite on October 31, 1996 in Guatemala City, Guatemala, he was enjoying a brief moment of fun in his hard life. Since age seven, he had worked at various jobs to provide food for his younger brothers and sisters instead of going to school.
The kite string got stuck in the proverbial power line. The power line snapped as Rene tried to retrieve the kite. Current passed through Rene's body resulting in severe burns and extensive tissue damage. Over the next four months, he had at least seven major surgeries, including carpal tunnel releases, progressive amputations, and residual limb revisions at San Juan de Dios Hospital in Guatemala. This process saved his life and left him a bilateral above knee and bilateral elbow amputee.
Rene comes to the USA
Rene came to Shriner's Hospital for Children in Tampa, Florida in July 1997. He initially showed dependence on all self-care skills except drinking from a straw that was placed in a drink for him and in transfers to and from mat, bed, wheelchair, floor and toilet. He mobilized in a wheelchair by sitting backwards and propelling the wheelchair with his lower residual extremities. Displaying the results of appropriate therapy, he showed no contractures and adequate strength. He showed well-healed residual limbs and no limitations in any type of sensation.
Focus of Initial Intervention
The medical team at Shriner's Hospital, composed of the orthopaedic surgeon, prosthetist. occupational and physical therapists, social worker, and nurse expressed some concern about minimal yet possibly troublesome bilateral fibular overgrowth since Rene stated minimal, transient pain upon his attempts to stand on the ends of his lower residual limbs. Rene's unique circumstances and values forced the medical team to determine an equally unique treatment plan that involved a dynamic process to meet his needs as he progressed through stages of acceptance, mastery, and recovery. In conjunction with Rene"s expressed needs and goals, the team initiated lower extremity prostheses and Physical and Occupational Therapies as the initial focus of his in-patient stay. The team tossed around the idea of upper extremity prostheses with a disparity of opinions. Rene had already experienced several stresses including:
- a quadrimembral traumatic injury
- loss of his most functional and personal self-care skills
- being away from his home and hospitalized for months
- a socioeconomic shock
- multiple surgical interventions over the past four months in Guatemala
- and just being a teenager
The team's decision at this point was to defer the upper extremity prostheses to the next annual visit based on statistically low level of acceptance rate of upper extremity prostheses, with a focus on prevention any additional stress on his self-esteem and feelings of accomplishment.
Rene's situation encompassed several special considerations in the initial lower extremity prosthetic evaluation: residual limbs lengths and shapes, living conditions, age, previous activity level, extent of trauma, and the ability for independent donning and doffing. The pros-thetist initially determined that the best option would be a PTB-SCSP with petite liners and bilateral plastazote distal end pads, exoskeletal construction, and Seattle Lite Feet. The prosthetist considered that joints and corsets might need to be added due to short limb lengths. Initially, Rene prioritized his Activity of Daily Living (ADL) interests as all aspects of dressing, toileting independently and eating independently without leaning forward to get the food off his plate with his mouth.
Rene's first achievements in ADLs were holding a cup with his mouth and drinking independently and donning and doffing his shirt and loose-fitting elastic-waist pants for the first time. Then, he refused to work on underwear and independent toileting - his two main goals!! He stated, "My wife will do this for me."
By the middle of July, Rene was able to bear full weight on his residual limbs in his check sockets with no difficulty or pain. He received bilateral PTB-SCSP BK LE prostheses on Berkeley jig, requiring a wider base of support. His first time up, he ambulated 75 feet with fair balance and an adequate base of support. Within three days, he ambulated 300 feet with one short rest break.
Rene accepted a two-handed cup instead of picking up a handleless cup with his mouth. He managed the new cup with his upper limbs independently, a more appealing option for an adolescent. He initially laughed at a commercially-available adaptive spoon with a l2 inch long soft foam handle that wrapped around his arm. Soon he insisted on using it at every meal.
Being a teenager...
In late July, Rene showed increases in his endurance in ambulation and donned and doffed the prostheses independently using his teeth and residual upper extremities. At the same time, he confided his bilingual Occupational Therapist a variety of feeling like "being better of dead." He verbalised that he would never be able to go to school or to work to support his siblings in his homeland. He "wanted to sleep all the time." He refused to share these feelings with the Hispanic Social Worker from the adolescent unit, consistently stating, "Everything's fine!' When not involved in prosthetic fitting, therapies, and school, Rene spent his time with other teens on the Beachcomber adolescent unit. A few Spanish-speaking teenage patients came and went, but most who stayed for an extended time spoke no Spanish, only English. Lacking even basic English skills, Rene, like many others in a foreign language situation, relied on non-verbal language. Frequently, he misinterpreted the other teens' behavior. For example, he stated that the other boys were laughing at him. He got angry. Sometimes, he understood parts of a conversation and felt that any bad words were names that the others were calling him. Sometimes he would react in anger with his only defense. Since he could not head-butt or hit anyone, he would spit. Spitting was interpreted as a juvenile reaction rather than a logical reaction in light of his limb loss.
Except for these instances, Rene appeared to be adjusting well to this situation. He enjoyed therapy to work on walking and worked hard to donn the prostheses independently with his mouth. He had to be reminded to be careful with his sharp teeth on the liners. Another dilemma was his inability to propel the wheelchair while wearing the prostheses. He had always used his residual limbs to push the wheelchair while sitting backward in it. He still needed a wheelchair for some instances.
He increased his tolerance to 300 feet times two with stand by assistance (SBA). The prosthetist continued to make minor adjustments during dynamic alignment. Rene's emotions on his modified body condition and his modified lifestyle rollercoasted daily, even hourly. One minute he anticipated returning home to Guatemala where his sponsor promised opportunities to study and work. The next minute he wanted to "jump out of the plane." Patients and families encouraged him to talk to the male bilingual Social Worker when he approached them with anxieties, worries, or concerns. He talked to bilingual Occupational Therapist but refused to talk to the Social Worker, except to say, "Everything's fine."
Rene inquired about upper extremity prostheses. He learned the statistics: that most people do not use them, especially compared to lower extremity prostheses. The team felt divided upon the issue: Issues of self-esteem, accomplishment, the complicated training involved, and the amount of stresses he had already faced were the issues the team tossed around. Training to work on falling with the lower extremity prostheses complicated the situation. Should Rene fall on his short upper residual limbs and risk injuries to his head OR use stubbies and risk possible impact injury to his upper extremities?
Upper Extremity Prostheses-Yes or No???
The bottom line: would Rene be able to try the upper extremity prostheses and, if he chose the statistically most popular option - REJECTION- maintain his self-esteem? After discussing the issues related to upper extremity prostheses thoroughly with Rene, the team decided to give the upper extremity prostheses a try possible beginning with stubbies based on his decision.
Rene still refused to work on the ADL goals of his selection: dressing and toileting skills. Instead he agreed to try a custom-made oral splint to hold a pencil or pen rather than hold the pen in his teeth.
Meanwhile, Rene began to show some scrapes on his residual lower extremities. He had never shown these before. They were not consistent with the use of the lower extremity prostheses, but rather with using his residual limbs to propel the wheelchair while sitting backwards in it. He had to stay off the prostheses to allow the injuries time to heal, but also needed to refrain from using the wheelchair. The energetic adolescent, Rene found ways to get into a wheelchair for mobility - and to delay the healing process.
He continued to refuse dressing and toileting intervention in OT, although he agreed to practice with a dressing stick for shorts with the idea that he might use the dressing stick with underwear in the future. He also began pre-prosthetic training to learn proper body mechanics to prepare the muscles that would be needed to operate the upper extremity prostheses.
After his scrapes healed sufficiently, Rene became an independent ambulator and performed so well that upper extremity stubbies were ruled out. He did, however, complain of continued pain in his distal fibula that was not relieved with a silipos sheath. In the middle of September, he received his bilateral upper extremity prostheses. Adjustments were made to maximize his excursion. His goals were to operate the terminal devises and elbow components in age-appropriate activities and to donn and to doff them with minimal assistance. He naturally and quickly developed the use of the right prosthesis as his dominant upper extremity. Soon he was stacking blocks with both terminal devices as an initial task. Within a week, he could utilize the elbows at various angles of flexion in age-appropriate activities.
Soon Rene worked only with the terminal devices, stating that he could not use the elbow component. Soon he stated that he did not like the prostheses. The team supported his decision to use his residual upper limbs instead of prostheses. The most important aspect of his decision not to use the upper extremity prostheses was that he did not feel any blow to his self-esteem. The team encouraged him to take the prostheses home just in case he changed his mind when he started school and work activities.
Upon discharge, he was excited to return home, loved his lower extremity prostheses, and still did not like his upper extremity prostheses. His sponsor, a North American with an international company, has taken responsibility for his education and eventual vocational rehabilitation. Rene left with a smile and expressed hope about his future in Guatemala. Within one month, his sponsor informed us that he really missed the USA and wanted come back - a very typical age-appropriate reaction. A three-month update showed Rene glowing with pride because he was dressing and toileting independently. He had just been promoted to second grade.
Now he is adjusting to his home yet looks forward to his annual update in the fall of 1998. The medical team looks forward to the challenge of modifying his plan of care according to his progress through his recovery, his acceptance, and his life stages.
Ms. Carr worked as an Orthotist at Shriners Hospital for Children, Tampa, Florida for 6 years and completed her certification as a Prosthetist in 1997.
Ms. Thompson is Team Leader of Occupational Therapy and Speech Pathology at the Shriners Hospital for Children in Tampa, Florida where she has worked for 13 years.