Psycho-social Considerations in the Rehabilitation of Children with Congenital Limb Loss
Christiane de Tonnancour, M.Ps.
Noëlla Shorgan, MA BScPT
In paediatric rehabilitation, psychological adjustment to the amputation has to be considered as a part of the natural evolution of personality development. There are critical stages in the process of becoming aware of one's difference and coping with social reactions to it. The usefulness of rote, automatic responses (attitudes or verbal statements) will be described, but a certain degree of chronic sorrow must be acknowledged for these children and their families. The case of Sophie will illustrate our assertion.
Juvenile amputations, psychosocial rehabilitation, adjustment to limb loss
The psychological adaptation to a congenital limb loss evolves within the normal process of personality development. The sense of self, which includes the body image, (Novotny, M. 1991, Fisher, K. and Hanspal, R., 1998, Desmond, D. and MacLachlan, M., 2002), emerges and evolves as a dynamic construction. Thus, awareness of one's difference proceeds through gradual steps. Adaptation to social reactions related to this difference also follows identifiable stages that induce a succession of normal developmental crises, of variable importance.
The infant is still unaware of his uniqueness but is exposed early on to many comments about his amputation in his immediate environment. Later, the toddler gradually recognises his(her) anatomical difference, as he (she) discovers other contrasts between children and adults, boys and girls, young and old people. Emotional crises are rare at this stage, as cognitive, verbal and affective immaturity allows the young child to rely on parents or familiar adults to deal with potentially difficult social situations.
At the age of questions, around age 3 and 4, the child will naturally begin to ask about his limb deficiency. Magical thinking prevails at this stage: the child may strongly believe that his limb will grow later and that he (she) will have all limbs as a grown-up. This illusion usually disappears spontaneously, much as the belief in Santa Claus does... With this stage, the wonderful indifference to social comments disintegrates. The child is no longer content to let adults answer for him (her), but has not yet built his (her) own coping strategies. This may be a difficult period, as the child often exhibits social discomfort and arouses parental concern, just as school is about to start.
The crisis enters a new phase with preschool integration. It can be considered as the prototype of all future social integration in new environments. The school is much bigger than the day-care centre and, this time, the child joins a new group of peers, fully conscious of their social reactions. Now is the time to use coping strategies by him(her)self. Classmates and the teacher will soon get used to his (her) amputation, but all year round, there will be other students, teachers or parents to meet for the first time. Dealing with these situations will develop his(her) coping skills. And thus it will be for each new social encounter throughout life.
Fortunately, most of our youngsters and their families become proficient using rote, automatic responses (attitudes and/or verbal statements) that reduce uneasiness to a minimal level and allows smooth social integration. Simple, factual statements, such as "I was born like this" or "I had an accident in my mommy's tummy and my hand didn't grow" are popular strategies; more examples of efficient responses to social reactions to an amputation are listed by Darlene Talbot, 1991. Varni, J. and Setoguchi, Y. (1991) identify five types of such responses and stress the value of these social abilities to handle peer reactions. These authors do not emphasise the repetitive nature of these strategies as we do. Our clinical experience leads us to believe that "putting the answering machine on" frees from repetitive emotional distress and is a very good tool for coping with intrusive staring, teasing or the same annoying questions. Of course, more creative and personalised responses are required for more significant social interactions.
Adolescence brings more complex challenges with the passage to high school and often first ventures into the work force. This stage will be easier for those who have previously succeeded in their social integration and developed good self-esteem. However, first sexual yearnings make any teenager very vulnerable. Grief for the perfect, symmetrical body can be intensely reactivated at this stage and become an important element of the normal adolescence crisis for our young amputees.
Of course, psychological adaptation to a congenital amputation does not start with a newborn child, but with his parents. They are the first to be abruptly confronted with the damaged body of their baby and the first to be challenged by social reactions in their environment. They must go through their own grieving for the "perfect child" and reconstruct their dreams around their new baby (Novotny, M., 1991). The rehabilitation team should acknowledge their need to grieve, regardless of the severity of the amputation, reassure them about the usually favourable evolution of young congenital amputees and give realistic information about emotional challenges to be expected. Above all, parents need to realise that "as the baby grows," they "also will grow in their experience and skills." (Talbot, D., 1991, p. 77)
In their efforts to cope with the situation, parents are the precursors of their child's psychological adaptation to his (her) amputation. Their coping strategies are the primary models from which the child elaborates his(her) own (Varni, J. and Setoguchi, Y., 1991). Parental failure to grieve and to adapt leads the child to construct his identity around his amputation, perceived as an unbearable cause of distress and/or social stigma. Varni, J. and Setoguchi, Y. (1993) have identified certain risk and protective effects of parental distress (especially depression and anxiety of the father), marital discord and quality of social support in psychological adaptation of children with limb deficiency. Their study indicates that there is no link between demographic variables nor degree of limb loss and the quality of psychological adjustment to limb deficiency.
However, as Michelle James (2004) reflected in her lecture about children with below elbow limb deficiency at the last ACPOC annual meeting, most families must deal with chronic sorrow. We concur with her that this recurs as the child progresses through developmental milestones. The professional team must assume its universal presence, even with well-adjusted children and families, and be prepared to offer support as need may arise.
Case presentation: Sophie
Sophie, an only child, was born with a right transverse, distal third, humeral amputation undetected in utero (incidence of unilateral tranverse humeral congenital amputation in our clinic's cohort: 5/174). Pregnancy was difficult and birth, at 31 weeks, was very stormy for both mother and baby. Life-threatening problems persisted for some days in the neonatal period, and the limb deficiency was far from being the immediate preoccupation. However, Sophie recuperated very quickly and there was soon no trace of her prematurity. Neonatal hospitalisation was short and family life started at home with no other complications.
Parents remember that the extended family was devastated by the amputation and that they were the ones to support everybody, leaving their own grief aside. They gave no sign of emotional distress and their relationship with the rehabilitation team was very functional.
Sophie received her first cosmetic prosthesis and training at 10 months (corrected age: 8 months). She soon wore it all day and integrated it into all her activities, even when giving hugs. At 22 months (corrected age: 20 months), she was equipped with her first mechanical prosthesis (voluntary opening terminal device, elbow with mechanical lock). She cooperated very well in her training and became proficient until age 3½, when she started to become agitated and resistant during training sessions. She was experiencing difficulty mastering the elbow function. At 4½, a new prosthesis was prescribed, with a VASI myoelectric hand (one electrode, two functions) and a mechanical elbow. By 5½, Sophie was a good wearer of her prosthesis and liked it, but she could no longer be considered as a good user; the prosthesis was reported to be heavy and often a hindrance in play activities. A lighter mechanical humeral prosthesis with a CAPP terminal device and no elbow nor forearm component, as well as an adaptation for her bicycle were then prescribed.
By the beginning of grade school, it became obvious that no prosthesis responded to Sophie's needs. She was more functional using certain adaptations only, such as her humeral socket adaptation with dual hand brake lever for her bicycle, and a humeral Orfit adaptation for playing cards. She quickly abandoned the adaptation for guitar ... The succession of these protheses and adaptations, of their use and of their replacement by others, is a good representation of Sophie's maturing interests and capacities throughout the years. Her parents had encouraged her to wear and use her equipment, but they respected her choice when she no longer felt the need for it. Sophie was always a brilliant student and integrated very well in school and her local community. She learned when to "put her answering machine on", made friends easily and never really experienced social rejection. At 14, after participating in a War Amputee Seminar, she requested a new trial with a myoelectric prosthesis, but abandoned the idea at the stage of evaluation of motor points.
Sophie and her family can certainly be considered as very well-adjusted to her limb deficiency. Nevertheless, mourning was a difficult process. Sophie required psycho- therapy between 8 and 10 when she experiencing mild recurrent depressive spells. During this period, her parents also benefited from counselling.
Although they remained quite functional, both parents went through a long period of depression some time after Sophie's birth. Sophie was a very gratifying child in many aspects. They gradually learned to recognise her keen intelligence and to use it to reconcile themselves with the limb loss. They succeeded in transmitting this adaptive strategy to their daughter. When they requested psychological help, the parents had already pulled out of their depressive state, but chronic sorrow and anxiety about Sophie's future were still part of their family life.
Sophie was very active in describing her recurrent distress. She recognised her invasive perfectionism as a frequent trigger for periods of deep sadness. She did not complain of any functional limitations, although she had some mild ones, nor express any discomfort about her social life, which she described as very good. At that time, the inability of the prosthesis to compensate the limb deficiency was no longer an issue. All through her psychotherapy, the theme of asymmetry and the sense of a damaged body image was the major element of her chronic sorrow.
Psychotherapy and counseling did help Sophie and her family to cope better with their chronic sorrow, but certainly could not free them from it. The intensity of this chronic sorrow varies considerably in our population and does not always require professional attention. Site of amputation, severity of impairment or prosthetic ability do not seem to correlate with the degree of psychological distress. Although we have no predictive tools to measure this, we feel that social, cultural and personal characteristics unique to each family are more useful to understand patterns of mourning and social integration. More research with objective measurement tools of psycho-social variables is needed to validate clinical experience in the rehabilitation of children with congenital limb loss.
Desmond, D. and MacLachlan, M. (2002) Psychosocial issues in the field of orthotics and prosthetics. Journal of Prosthetics and Orthotics, 1 (14), 19-22.
de Tonnancour, C. and Shorgan, N. (2004) Les défis de la réadaptation de jeunes amputés. Lecture given at the 5th congress of the Association Québécoise des Intervenants auprès des Personnes Amputées, Québec.
Fisher, K. and Hanspal, R. (1998) Body image and patients with amputations: does the prosthesis maintain the balance? International Journal of Rehabilitation Research, 21, 355-363.
James, M. (2004) How does a prosthesis help? A challenge to improve the care of children with below elbow deficiency. Lecture given at the March 2004 Annual Meeting of the Association of Children's Prosthetic and Orthotic Clinics, Banff.
Novotny, M. (1991) Psychosocial issues affecting rehabilitation. Physical Medicine and Rehabilitation Clinics of North America, 2 (2), 313-393.
Talbot, D. (1991) Helping the limb deficient child deal with social reactions to physical difference. Journal of the Association of Children's Prosthetic Orthotic Clinics, 25 (3-4), 76-80.
Varni, J.W. and Setoguchi, Y. (1991) Psychological factors in management of children with limb deficiencies. Physical Medicine and Rehabilitation Clinics of North America, 2 (2), 395-404.
Varni, J.W. and Setoguchi, Y. (1993) Effects of parental adjustment on the adaptation of children with congenital or acquired limb deficiencies. Developmental and Behavioral Pediatrics, 4 (1), 13-20.
Please address all correspondence to:
Noella Shorgan M.A., BSc, PT
Centre de Réadaptation Marie Enfant
de l'Hôpital Sainte-Justine
5200 Bélanger est, Montréal, Québec,