A Study Of The Mental And Emotional Development Of The Thalidomide Children And Of The Psychological Reactions Of Their Mothers: A follow-Up Study
Therese Gouin-Decarie, Ph.D.
This long-term project is supported by the Canadian Council of Medical Researches and is under the supervision of the author, who is also Professor, Institute of Psychology, University of Montreal.
The longitudinal study of infants suffering from thalidomide-induced congenital malformations, which was started in January 1964 at the Rehabilitation Institute of Montreal with the collaboration of the Institute of Psychology of the University of Montreal, entered its second phase in January 1966.
As outlined in an earlier article in the Inter-Clinic Information Bulletinl, the research has a double aim: evaluation of the intelligence and social evolution of thalidomide children suffering from malformations involving the upper and/or lower extremities, and an investigation of each mother's perceptions of her child's handicap.
Simultaneous retesting of the children and systematic interviewing of the mothers took place at the Institute of Rehabilitation between January and June 1966. The techniques and procedure used during this second and twofold study were described in the ICIB. Therefore this report will be limited to a selective summary of the data analyzed to date.
Subjects' Mental Development
A comparative analysis of the IQs obtained during the first evaluation (1964) and those obtained at the time of follow-up (1966) was made by Francine B. Tremblay, L.Ps. It shows a clear increase in IQs, the actual mean being 98 compared with the previous one of 88. Table 1 , which presents intellectual levels based on Pinneau's revision of the Stanford Binet Intelligence Scale2 shows this general trend.
Even more interesting, perhaps, are the changes noted in the psychological profiles. These profiles reveal the subjects' development in four main areas: locomotri-city, personal-social relationships, language, and adaptive behavior to objects. An unexpected result of the first evaluation had been that the subjects performed best in the area of fine motor coordination and least well in language. The second evaluation yields different results: the delay in speech development is considerably reduced, and it is now the area of motricity which shows the most severe retardation. These recent data approximate more closely those already obtained by Strasser and Sievert.3
Subjects' Conception of Space
A pertinent problem in studying the psychology of children born with deficient limbs relates to their conception of space, an area closely associated with the genesis of the body image, upon whose spatial aspects Schilder has repeatedly insisted. In order to investigate the development of the subjects' spatial notions, three techniques utilized by Piaget4 and recently standardized for the French Canadian population by Pinard and Laurendeau 5 were administered to our sample. These data were compiled and analyzed by our professional associate, Mme. O'Neill-Gilbert, L.Ps.
The results indicate that approximately 80 percent of the subjects in the sample are slower than the average child in acquiring fundamental spatial notions. A beginning awareness of the topological properties of space was apparent. In this respect, the perception of proximity, which is probably the most primitive of all relationships, was the one most frequently used by the subjects. In contrast, the concept of projective space, involving the coordination of viewpoints in keeping with successive displacements and consideration of the metric properties of Euclidian space, has barely begun to be developed. Of particular interest is the fact that children depended on and made use of the visual rather than the tactile image in the recognition of familiar objects. The relationship of these findings to the severity of the physical handicap remains to be determined.
It is interesting to note that the results of the investigative technique involving "Human Figure Drawing" and conception of space are similar, in that they both give evidence of some delay in development. This fact suggests that the polarity of body-inner space and environment-external space are closely related, not only from the point of view of perception, as Wapner and Werner have suggested6, but also in their genesis.
Mother's Perception of the Child's Handicap
The senior research assistant, Ethel Roskies, L.Ps., is responsible for this part of the project. She used semistructured interviews consisting of direct and open-ended questions as a basic investigative technique. These interviews lasted from three to six days, so that there are from 100 to 150 pages of notes for each case. It is from this material that the following partial report of results is derived. They were compiled and analyzed by the senior research ass istant.
There is no simple, direct correlation between the nature and severity of the handicap and the mother's judgment of the child's normality or abnormality, her feelings about the child, or her handling of him. This accords with the data relating to the children, which clearly shows that no simple relationship exists between handicap and general level of development. Rather, the major finding is that the mother's perception of her child is a very complex synthesis of psychological and sociological factors and, more important, is part of a developmental process that fluctuates through time. At any given moment a mother's perception of a child's given trait or action is influenced not only by the current situation, both internal and external, but also by her past experiences and future anticipation. In spite of the complexity inherent in such a view, it is possible to find a common characteristic "developmental process" that can be isolated, described, and interpreted.
This can be illustrated by the mother's changing attitudes toward the prostheses.* Four major periods appear to be psychologically relevant here and can be termed (1) the global crisis of birth, (2) the psychological birth of the baby, (3) the formal habilitation program, and (4) present perceptions.
Global Crisis of Birth
Chronologically, this period varied from a few days in the case of one mother to months in the other cases. The chief characteristics of this period are as follows:
The major focus was on the global perception of the child, specifically on the issue of whether the child would survive or die. With only one exception, all the mothers spontaneously expressed their death wishes toward the child at the time of birth. This phenomenon is so universal in our sample as to be considered part of the normal reaction pattern in the case of a limb-deficient child.
The possibility of prostheses as such was of little significance at this time. While 50 percent of these mothers did hear some mention of prostheses in the first few days, the reference was essentially to a generally vague, comforting device. No detailed information was provided as to age of fitting, what prostheses were like, or what they could do. None of the mothers considered consulting a physiatrist or was advised to do so.
In spite of the fact that these children were essentially phocomelic, the hospital staff and the mothers perceived them to be in the same category as amelics. These deformed appendages were viewed as useless, and the search for compensatory functions was focused on such factors as intelligence, rather than on any residual function in the deformed limbs.
Psychological Birth of the Baby
This stage is characterized by the beginning acceptance of the fact that the baby would neither die nor be miraculously cured, but would continue to live and be deformed. Surprisingly enough, reaching a decision to take the baby home or institutionalize him did not of itself indicate the attainment of this stage, although in some ways it was easier for the mothers who took their babies home to focus on daily reality.
In the absence of detailed advice on how to rear a limb-deficient child, the mothers of the upper-limb phocomelic babies started to stimulate the feet as a replacement for the hands, although this substitution aroused some anxiety in all of them. Nevertheless, four of the eight upper-limb phocomelic babies who were taken home spontaneously began to use their hands at ages varying from five to eight months. While the emotional impact of this change was strong, its implication for the future utility of the deformed hands was not realized. In the one case of a lower-limb phocomelic baby taken home, there seemed to be less pressure for, and less possibility of, substituting hands for locomotion. During this period, the possibility of fitting prostheses first became significant due to the discovery that the deformities were thalidomide-induced, the setting up of the government's habilitation program, and reports from Europe stressing the early fitting of prostheses. All of the parents at this point regarded the future prostheses as the "new hope" and were impatient for the program to begin.
Formal Habilitation Program
In spite of the fact that all of the children had at least one prior medical consultation and two had undergone surgical procedures, for most of the mothers the habilitation program formally began with the childrens' arrival at the Rehabilitation Institute of Montreal at ages varying from 11 to 30 months.
It appears that mothers of predominantly upper-extremity phocomelic children react differently from those of children with lower-extremity or multiple involvement. While the handicaps are more varied in this latter category, the psychological reaction appears simpler. Regardless of any initial disappointment in the unavoidable awkwardness of the prostheses, all of these mothers accepted them as being absolutely necessary. Certain factors contributed to this perception: the two children with solely lower-limb phocomelia had their feet amputated, thus removing any conflict between limb and prosthesis, while the two others had such multiple deformities (in both cases all four limbs as well as other deformities were involved) that prostheses offered the only hope for a semblance of normal functioning. In fact, two mothers in this category were first able to consider the possibility of raising their children at home following the fitting of prostheses.
For the mothers of children with predominantly upper-limb phocomelia, the situation was psychologically more complex. Even those mothers whose children were not yet using their hands were able, in the hospital, to see that other upper-limb phocomelic children were capable of using their hands. Moreover, during the period that the children were hospitalized for evaluation and for prosthetic fitting, the policy of the nurses and occupational therapists was to encourage the use of the hands for self-care activities. This marked a considerable reversal; the previous efforts of the mothers to stimulate the feet were discouraged and the hands became the new focus of attention.
For these upper-limb phocomelic children the actual fitting of the prostheses occurred around the age of two years. When shown the actual prostheses that their child would receive, two mothers continued to be pleased, but six were disappointed. The reasons given for this disappointment are verbalized as seeing the prostheses as cold, hard, artificial, cumbersome. It is interesting and significant that in spite of the fact that all these mothers hoped for future prostheses that would have hands, rather than hooks, none was able to verbalize her disappointment that in fact she was being offered hooks and not the missing hands. Nevertheless, in spite of their reservations, all mothers accepted the prostheses, and whatever the emotional conflict centering about the artificial limbs, they all stressed that their actual training in helping the child use them was excellent.
Present Perception of Prostheses
The dichotomy between the mothers of upper-limb phocomelia children and those of lower-limb or multiple-limb-deformed children concerning the prostheses continues to the present. The mothers whose children wear only upper-limb prostheses find that the children wear them for only a limited amount of time, cannot manage them alone, are more dependent with them, and are harder to caress. In terms of visual appearance, most mothers feel that the children look more abnormal, but two mothers have mixed feelings. Nevertheless, all but one of the children wear their prostheses at home occasionally, and at least four of the subjects wear them for visiting.
For the children with lower-limb prostheses or upper- and lower-limb prostheses, the situation is quite different. Here the mothers tend to consider the children more independent with the prostheses, they find the visual appearance improved, and, not surprisingly, wearing time is much longer.
Our growing knowledge of the psychology of the thalidomide child and of his mother forces us to modify most of our original hypotheses. The complexity of the mental and emotional development of the limb-deficient subject seems to be paralleled by the diversified and fluctuating perceptions of his mother. This mother, like the mother of any normal child, has to meet the challenge of a changing reality (which is that of growth itself), but in her case this reality is fraught with the unavoidable anxiety accompanying the unknown.
*We have chosen the problem of prostheses as the first one for study because it formed the core of the habilitation program. Nevertheless, we believe that the data concerning this one area can be generalized to other areas. For the study of mothers' perceptions of the prostheses, our original sample of 20 is reduced to the 13 cases in the thalidomide group for whom prostheses were prescribed and fitted. It should be noted that these are among the most severely handicapped children in the thalidomide program.
Therese Gouin-Decarie, Ph.D. is a Psychological Consultant at Rehabilitation Institute of Montreal Montreal, Quebec, Canada
1. Gouin-Decarie, Therese, Ph.D., "A Study of the Mental and Emotional Development of the Thalidomide Children and of the Psychological Reactions of Their Mothers," ICIB, VI:8-12, January 1967.
2. Pinneau, Samuel, Changes in Intelligence Quotient. Infancy to Maturity, Houghton and Mifflin, Boston, 1960.
3. Strasser, Hellmut, and Sievert, Elizabeth, "On Psycho-Social Aspects of Ectromelia," Research report of the Mental Health Group, Munich, 1964.
4. Piaget, Jean, The Child's Conception of Space, Rontledge and Kegan Paul, London, 1948.
5. Pinard, Adrien, and Laurendeau, Monique, Les Premières Notions de L'Espace Chez L'Enfant, Presses Universitaires de France (in press).
6. Wapner, Simon, and Werner, Heinz, "An Experimental Approach to Body Perception From the Organismic-Develop-mental Point of View," The Body Percept, Random House, New York, 1965.