Physical and emotional aspects of congenital heart disease in children

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Physical and Emotional Aspects of Congenital Heart Disease in Children LEONARD M. LINDE, MD FORREST H. ADAMS, MD, FACC GERALD I. ROZANSKY, MD Los Angeles, California The physician who deals with children with con- genital heart disease should be aware of the devel- opmental, intellectual and emotional patterns that accompany this handicap. There may be adverse effects on growth and on intellectual and behav- ioral development of the child. Parental attitudes toward the child with heart disease may interfere with his development and with the ability of the family to cooperate with the therapeutic regimen. The normal development of healthy siblings may be affected by the disturbed family relations. Physical factors : Growth retardation, more for weight than height, may be present in children with congenital heart disease. This retardation is more prominent in those with cyanosis. As a group, children with cyanosis and physical incapacity show greater physical retardation, but there is no linear relation between these handicaps and slow gr0wth.l Children with cyanotic congenital heart disease have delayed pubescence implying endo- crine or central nervous system derangement. Puberty may begin in these children as late as 3 or 4 years after the expected age. Similar delay in pubescence has been noted in children in the Peru- vian highlands compared to their compatriots liv- ing at lower altitudes. In cyanotic patients, pu- berty begins when the children reach a normal height for a 12 or 13 year old rather than in rela- tion to their chronologic age. Mental development : Physicians and parents of children with cyanotic congenital heart disease are often concerned with the possible deleterious effect of implied suboptimal cerebral oxygenation on intellectual functioning. In tests of intellectual function, children with congenital heart disease From the Division of Cardiology, Department of Pediatrics, University of California at Los Angeles School of Medicine, Los Angeles, Calif. Address for reprints: Forrest H. Adams, MD, the Division of Cardiology, Department of Pediatrics, Universitv of Cali- fornia at Los Angeles School of Medicine, Los Angeles, Calif. 90024. score lower than normal children. This retardation is particularly evident in the first 3 years of life and is more marked in cyanotic children. This find- ing is difficult to interpret since developmental tests (Gesell and Cattell) administered in the first few years of life rely to a large extent on gross motor functioning. Many children with cardiac dis- ease demonstrate impaired physical capacity which may limit their responsiveness and ability to per- form physical exercise. This deficit is particularly apparent when the child is asked to perform tasks depending heavily on gross motor activity. In such children a better estimate of ultimate intellectual capacity can often be obtained if more emphasis is given to adaptive and social behavior than to gross motor achievement. Older cyanotic children tend to have normal I.&. scores with standard tests (Stan- ford Binet scales) although their results tend to fall in the lower end of the range of normal intel- ligence. Other factors that may be responsible for retarded development in these children include al- tered or limited environmental experiences such as decreased social contacts, numerous hospitaliza- tions and deficits in school experience.* Psychologic factors : The presence of congeni- tal heart disease has emotional effects on the child and on family interrelations. The impact of the physicians diagnosis induces significant changes in family attitudes, but these changes are not nec- essarily related to severity of the disease or to the incapacity of the child. Poor psychological adjust- ment and anxiety in the child with heart disease relates more to maternal anxiety and pampering than to his degree of incapacity or severity of dis- ease.; This is in contrast to the doctors prescrip- tion of limitation for the child which, as might be expected, is highly correlated with severity of dis- ease and incapacity of the child. An interesting sidelight is that normal siblings of patients with heart disease often receive different parental treat- ment from that given to well children in families without children with heart disease. Siblings of children with heart disease are pampered much 712 The American Journal of CAkDlOLOGY EDITORIALS less than a group of children of similar age chosen randomly from a well baby clinic, perhaps because excessive demands on the mother of a sick child lead to decreased or subnormal attention given to normal siblings.5 Psychological and intellectual de- velopment in these normal sibiings is nevertheless indistinguishable from that of other normal chil- dren and superior to that of his more protected sibling. Psychiatric aspects : In sessions conducted with the help of a psychiatrist, several reactions were noted in the parents of children with severe cyanotic congenital heart disease.6 Anticipation of grief over possible, loss of the child was described by most of the parents. This was manifested by-in- ordinate difficulty in leaving the child for any pe- riod of time, inappropriate concern about his cry- ing or about minor illness, and either withdrawal or overinvolvement during or after hospitalization. In some instances, the child passivity, based on organic factors, was met with a reciprocal ma- ternal inactivity. Some parents felt unconscious anger toward the child, which accentuated their feelings of guilt. Although these sessions appeared quite success- ful in dealing with the feelings of parents of in- fants with congenital heart disease, parents of older affected children were more resistant to and upset by attempts to bring feelings into the open which had been handled by various methods. Effects of operation: The effects of palliative or curative surgical intervention are evident in the child and his parents. The greatest improvement in psychological adjustment and behavior is seen in surgically treated cyanotic children, with less change in those with other forms of heart disease. Physical performance increased in all children after successful operation but more so in the cya- notic group. Severe psychological reactions to heart surgery on the part of the children are rare, in contrast to their more frequent occurrence in adults.R Minimal mental aberration on the first day after operation is related to the length of the pro- cedure and the duration of extracorporeal circula- tion. In the younger children the first few postop- erative days are often characterized by anger di- rected against the parents and the physician who has cared for the child. This is the childs view of the operation and attendant pain as a pun- ishment and his feeling that those adults with whom he had. a close relation were unwilling or unable to protect him. After operation, parents of all children with car- diac disease are less anxious about them, and pamper and protect them less, but some parents never completely cease being overprotective even after the child is cured. There is a relation between the magnitude of parental concern and the pres- ence of cyanosis, only partly related to the fact that these children are often more incapacitated. In these cases, the obvious effects of relief of cyanosis produce the maximal decrease in parental anxiety. Conclusion : As with all life-threatening ill- nesses, congenital heart disease may exert a diffuse effect not only on the affected child but on the en- tire family. Knowledge of the developmental pat- terns may help the physician in the prevention of nonorganic disease in the patient and his family. References 1. Linde LM, Dunn OJ, Schireson R, et al: Growth in children with congenital heart disease. J Pediat 70:413-419, 1967 2. Frisancho AR, Thomas.RB, Baker PT: Growth patterns of a highland Peruvian population: a prefiminary analysis. Department of Sociology and Anthropology, Pennsylvania State University, 1965 3. Rasof B, Linde LM, Dunn OJ: Intellectual development in children with cyanotic congenital heart disease. Child Develop 38:1043-1053, 1967 4. Linde LM, Rasof B, Dunn OJ: Mental development !n congenital heart disease. J Pediat 71:198-203, 1967 8. Linde LM, Rasof B, Dunn OJ, et al: Additional factors in congenital heart disease. Pediatrics 38:92-103, 1966 Rozansky GI, Linde LM: Psychiatric study of parents of children with cyanotic congenital heart disease. Pediatrics, in press Liude LM, Rasof B, Dunn OJ: Longitudinal studies of intellectual and behavioral develoDment in children with congenital heart disease. Acta Paediat Stand 59:169-176, 1970 Gilman S: Cerebral disorders after open heart operations. New Eng J Med 272:489-498, 1965 VOLUME 27, JUNE 1971 713