The Thalidomide Project: Five Years of Research

Therese Gouin Decarie, Ph.D.


This project is supported by the Canadian Council of Medical Research and is under the supervision of the author, who is also Professor, Institute of Psychology, University of Montreal.

The four-year study of children suffering from thalidomide-induced congenital malformations, which began in January 1964 at the Rehabilitation Institute, with the collaboration of the Institute of Psychology of the University of Montreal, entered its third and terminal phase in October 1968. As outlined in earlier articles in the Inter-Clinic Information Bulletin,1,2 the research had 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.

Maternal Perceptions

Analysis of the data collected from the mothers during the year 1966-67 was completed by Ethel Roskies, Ph.D. As mentioned previously, the investigator's attention was focused on three general areas, namely: (1) environmental reactions (next of kin, neighbors, hospital environment, etc.); (2) patterns of child rearing; and (3) psychological significance of prostheses.

The results of this work are described in a huge document entitled, "Abnormality and normality: mothers' perceptions of their congenitally limb-deficient children."3 It is impossible to recount the outcomes of this study, even partially, in this report. Nevertheless two major conclusions should be mentioned.

The social context is an essential element in the mother-child relationship of mothers who have given birth to children afflicted with congenital malformations caused by thalidomide. None of the mothers interviewed had developed an emotional bond or perception of the handicapped independent of the social standards of the environment. The categories commonly used in dealing with handicapped children (acceptance, rejection, overprotection, etc.) are neither adequate nor functional. The phenomena involved are so tightly linked with the total sociological context that the analytical methods of social psychology seem to account better for the reality observed than do the analytical methods of clinical psychology.

Three major factors which influenced the type of conflict and the possible modes of solution can be identified. This is true at least for our group of mothers. (A somewhat similar research carried out by Helmut Strasser in Germany4,5,6 used a methodology very different from ours, hence comparison of the data is difficult.)

The first factor was that the congenital malformation is immediately detectable at birth. In contradistinction to mothers of children who are deaf, blind, or mentally retarded (and for whom a diagnosis is rarely established before the age of 5 or 6 months), mothers of thalidomide-affected children were faced with the anomaly of their offspring even before they were able to establish an emotional relationship with them.

The second factor was the institution of a rehabilitation program launched by the federal-provincial authorities. Help offered by the Rehabilitation Institute of Montreal encouraged a gradual modification of the social significance of the malformations and, consequently, the gradual modification of the social significance of being the mother of a malformed child.

The third factor was the rarity of this form of handicap. At first, this rarity intensified the trauma for the mother who felt she had been cut off from the world for having given birth to such a child. Relatively soon, however, realization of the fact that, in the majority of cases, no impairment of intelligence, hearing, vision, or motor coordination was present, allowed mothers to hope that the possibility of social integration for these children would be greater than in the case of other handicapped children. Strangely enough, the fact that there existed no schools for these "exceptions amongst exceptional children" has facilitated their entrance into normal schools where most of them now are.

Psychological Development of the Children

The initial evaluation took place in June 1964 when our subjects were two years old, the first follow-up was in January 1966 when they were about three-and-a-half years of age, and the third evaluation was completed in March 1969 when the children were six years of age or older. Thus, this longitudinal research covers three very different developmental levels: the subjects were seen as infants, as toddlers, and as school children.

We have always tried to focus attention on the whole child as he develops. By this we mean that we have studied him from the emotional as well as the mental point of view and that we have had to scrutinize different problems at different age levels. At the initial evaluation, we concentrated on each child's psychological development as a whole, but were greatly interested in the influence of hospitalization on the infants. At the second evaluation, when the children had acquired language and the capacity to interiorize conflict, we focused on body image and awareness of the handicap. This part of the project was under the immediate responsibility of Mrs. Monica Gilbert, L.Ps. At the third, and last, evaluation, when the children had already attended school for a few months, we began working on a vital problem—that of their learning to write without limbs. This part of the project was under the immediate responsibility of Mrs. Francine Tremblay, L.Ps.

In this brief article, we shall limit ourselves to one small aspect of the research: the mental development of our children, as evaluated by classical intelligence tests at the last assessment.

Our sample at that time consisted of 22 children (18 girls and 4 boys). The subjects' ages ranged from 6 years to 7 years 1 month, the mean age being 6 years 5 months. (One child of German descent, who was 7 years 10 months, is not included in these statistics.) It is difficult to describe the anomalies briefly. Table I , based on Webb's classification7 indicates some of the specific characteristics of the sample.

All children were seen as out-patients they were always accompanied by their mothers but often by both parents. The administration of the Stanford-Bin et Intelligence Scale8 and the Griffiths Extension Scale9 yielded the results shown in Table II .

The distinction of these scores is still far from the normal curve, but nevertheless there was a stronger concentration of children within normal limits (10 out of 22) than was found previously. The mean IQ was now 94.4. As one can see, in the lower class (defective) our percentage was much higher than the theoretical percentage in the normal population.

If one compares these results with those of the previous evaluation (the mean interval between the two is 32 months), some interesting data begin to emerge. Limiting our analysis (because of space) to the change in mental level, we find that between the second and third assessment, six of our subjects showed lower IQs and dropped from a higher mental level to a lower one, while four rose from a lower to a higher level.

A study of individual cases is enlightening. Amongst the children who performed less well than before, three passed from a borderline defective level to true mental deficiency. This was not surprising: it is well known that a low IQ tends to become even lower as the individual grows older. The change from hospital to home and the mastery of walking had previously given the illusion of a sudden spurt in development (there was a significant improvement between the first and second evaluation), but now our mentally handicapped children had, in a sense, begun to "settle down" in their deficiency.

Amongst the other three children who showed lower IQs, we found two of our most gifted subjects and one who was in the superior category. Other tests showed that these children not only had become acutely aware of their handicap, but they were also in an emotional conflict that in itself explained a poor performance. The parents of one girl had recently separated, the mother of the second had become a chronic alcoholic, and the third girl had stopped competing in school and was slowly retreating into daydreams.

For the children who had changed from an inferior mental level to a higher one, we believe that school attendance was probably the determinating factor. It is clear that in at least two cases this was so: one, a girl who had lacked stimulation at home was now receiving it at school, and the other, a boy, had finally escaped an overprotecting mother who, although he was only slightly handicapped, had always considered him as "un infirmede la thalidomide."

Conclusion

After five years of intensive research on a particular sample, the mass of accumulated data is overwhelming, and one cannot report upon it without being extremely selective. This article can only give a limited idea of the work that has been going on since 1964 (as though a quilt had been shrunk to the size of one patch...). Its only justification is that it provides advance information to those who are interested in the problem of the limb-deficient child and in the research program being carried on at the Rehabilitation Institute of Montreal prior to the publication of the definitive and exhaustive report.

Therese Gouin Decarie, Ph.D. is a Psychological Consultant for the Rehabilitation Institute of Montreal, Montreal, Quebec, Canada

References:
1. Gouin Decarie, T., A study of the mental and emotional development of the thalidomide children and of the psychological reactions of their mothers, Inter-Clin. Information Bull., 6:8-12, Jan. 1967. 
2. Gouin Decarie, T., The mental and emotional development of the thalidomide children and the psychological reactions of the mothers. A follow-up study, Inter-Clin. Information Bull., 7:1-6, Jan. 1968. 
3. Roskies, e., Abnormality and normality; mothers' perceptions of their congenitally limb-deficient thalidomide children. These de doctorat inedite, Universite de Montreal, 1969. 
4. Strasser, H , Die wirtschaftlichen Bedingungen zur psychischen und sozialen Habilitation behinderter Kinder. Jahrbuch der Deutschen Vereinigung fur die Rehabilitation Behinderter e. V.-De.Vg. 1967/68. 
5. Strasser, H., Uber einige Moglichkeiten, die psychologische und padagogische Betreuung der gliedmassen-fehlgebildeten Kinder zu verbessern. Die Rehabilitation, VII, 1, pp. 10-21, 1968. 
6. Strasser, H., Der Einfluss der Erziehungsumwelt auf die Entwicklung korperbehind-erter Kinder. Praxis der Kinderpsychologie und Kinderpsychiatrie, XVII, 2, pp. 37 40, 1968. 
7. Webb, J. F., Canadian thalidomide experience. Canad. Med. Assoc. J., 89, 987 992, 1963. 
8. Terman, L. M. and M.A. Merrill, The Stanford-Binet intelligence scale. Boston, Houghton Mifflin, i960. 
9. Griffiths, R,, Griffiths Extension Scale. Unpublished. 1967. 
10. Pinneau, S. R., Changes in intelligence quotient; infancy to maturity. Boston, Houghton Mifflin, 1961.