Counselling Parents Of Children With Congenital Deformities Of The Limbs

Chester A. Swinyard, M.D. Kay Perfect, M.S.W. George G. Deaver, M.D. Leon Greenspan, M.D.


In our limb deformity clinic we have become acutely aware that parental feelings of guilt, rejection of the child, and unrealistic expectations may be intensified or ameliorated in the initial contact. The nature of the advice provided by the individual who first informs the mother that she has given birth to an infant with a limb deformity, and the manner and skill with which it is given is critically important.

In this article we will discuss the various circumstances relating to the manner in which a mother first obtains knowledge of her baby's malformation and summarize what we have learned in three years of parental group meetings, held as adjuncts to our clinic counselling program.

Nearly all mothers are at least vaguely aware of the existence of congenital malformations. If someone in or close to the family has had a baby with an obvious congenital defect, the possibility that such a catastrophe might happen to her may be frequently or constantly on the mother's mind. In such instances, she may require help from her obstetrician during prenatal care.

The greatest wish of a prospective mother is to deliver a beautifully developed, normal baby. After delivery, the mother expects to see her baby as soon as possible. The shock and dismay and, in some instances, disbelief that she has delivered a baby with a deformity, requires that the greatest skill and understanding be employed in telling her what has happened. Consideration should be given to the technique of informing the parent, the time factors involved and the training of the physician who acts as the informant.

Problem in Large Cities

Ideally, the obstetrician who has provided prenatal care and is the physician in whom the mother has confidence should be the one to inform her (unless the husband desires to do it). Regrettably, this ideal cannot be achieved in a significant percentage of the deliveries. Lesser1 has pointed out that low income families comprise a larger proportion of the population in the large cities than they do nationally and that a high percentage of the births in these cities occur in public clinics.

Oppenheimer2 found that 60 percent of the births to women residents in the District of Columbia occurred in public clinics (45 percent of the low income obstetrical patients received no prenatal care3). in New York City, 40 percent of the city's residents are provided services by the public clinics but there is also a large number of women who receive no prenatal care.1 It is also pertinent that in 1957, among 70,952 women with adequate prenatal care in New York City, the prematurity rate was 7.8 percent. Among 8,683 women with no prenatal care, the prematurity rate was 20.3 percent.4 At Grady Memorial Hospital, Atlanta, Georgia, 23 percent of all patients delivered made their first visit to the hospital when they were in labor.1 It is possible that the incidence of limb deformities is greater in these low income groups.

These data would suggest that in our major cities the task of informing a mother of her baby's limb deformity frequently falls upon a young intern or resident in obstetrics who may be a virtual stranger to the mother. It may be the policy and/or the desire of the obstetrical service that parents be informed in an appropriate manner. However, such a policy can be negated by the reactions of personnel in the delivery room. The mothers inform us, for example, that they frequently hear expletives of surprise and dismay when a malformed baby is delivered. This overt reaction plus the sudden change in staff attitudes in the delivery room indicate to the mother that something is seriously wrong. To a number of mothers in our parental group this experience was extremely distressing. It is important that the staff do not unconsciously transmit information to the mother in this manner.

Desirable Procedure

If possible, the father should be consulted immediately and should be allowed to inform the mother, if he desires to do so. The physician, however, should be present. In our discussions with the parents, we have learned that the father rarely wants to be the one to tell his wife the unfortunate news and it is the unusual father who is able to do it effectively. There should be no undue delay in informing the mother of the situation and under no circumstances should she be allowed to discover the defect herself.

It is desirable that a pediatrician examine the baby at the request of the obstetrician and then be present when the mother is informed. The existence of a limb deformity should be explained briefly and the normal and positive features of the baby emphasized. The baby should be presented to the mother in such a way that her attention will be directed initially to the normal and attractive features of the infant. She should obtain a favorable reaction before the deficient limb is shown to her.

The distraught mother will immediately ask a barrage of questions such as: "What can I do about it?"; "What did I do to cause this?" and "What are the chances of my having another baby like this one?" The young obstetrician or pediatrician may be looking at the first living limb deficient child in his life and, too frequently, attempts to escape from the situation by responding, "They make wonderful prostheses these days" and "They can make an artificial hand that looks almost exactly like the natural hand." Remarks of this type create a desire for the immediate fitting of the most natural-appearing prosthesis available. This mind set, of course, creates problems for the limb deformity clinic staff and frequently makes it difficult or impossible to persuade the parent to accept a more appropriate prosthesis.

Neither the obstetrician nor the pediatrician will normally know enough about the problems of limb deficiencies and prosthetic appliances to give specific advice. A competent specialist in this area should be brought in to counsel the mother as soon as possible after the birth.

The habilitation of a newborn child with a limb deficiency should begin at the mother's bedside and continue as an active educational program. Parental acceptance of the baby and cooperation with the clinic are necessary prerequisites to a successful habilitation program.

The mother's question as to what are the chances of having another baby similarly deformed is not easy to answer. Adequate factual data is simply not available. It has been estimated that only 10 percent of the cases of limb deficiencies can be ascribed to genetic causes. Specific genetic counselling is required in these cases.

Emotional Support

Emotional support of the parents is of particular importance during the early period. The manifestation of an element of guilt, subconsciously or consciously expressed, is not uncommon. The parents feel that they are in some way to blame for the defect and may cast around for all kinds of causes to which it may be attributed.

The mother is usually more affected than the father in this way. Her guilt and self reproach sometimes become overwhelming and she may become severely depressed, expressing irrational and even bizarre ideas concerning her imagined role in damaging her baby. The parents should be assured that, to the best of our knowledge, nothing they did or did not do is related to the production of the limb deformity. In extreme cases the help of a skilled psychiatrist should be sought.

It was our observation that the conversations of parents with each other on clinic days had a mutually beneficial effect. This encouraged us to establish the parental group sessions three years ago. The sessions were designed primarily to allow the parents to share their common experiences during the bimonthly evening group sessions. The group meetings were informal, unstructured and were moderated by a social worker (KP)

Through the sessions we learned that the physician who delivered the baby failed to inform the mother of the baby's deficit in a large percentage of the cases. The element of timing was a major problem. The longer the physician waited before informing the mother, the more likely was the possibility that the mother would learn about the malformation from another person.

In some instances, a mother waited not hours but days before the physician informed her of the malformation. In one case involving the birth of a child with a quadruple deficiency, the physician did not contact the mother or bring the baby to her for eleven days. However, she was aware of a serious problem of some sort because she overheard the gasps of surprise and sudden silence in the delivery room. We were shocked to learn that frequently mothers first hear of their babies' limb deficiency from the nurse, nurses' aide, dietitian or the night cleaning maid.

Three problems develop as a result of the failure to provide properly timed, accurate advice given by a physician trained in limb deformity habilitation. Unnecessary anxieties are engendered in the mother; difficulties in the mother's acceptance of the child may be created; and she may develop unrealistic expectations regarding prosthetic appliances.

Conclusion

It has been our experience that we are more successful in gaining parental understanding, acceptance and cooperation if a trained counsellor contacts the parents during the first week of postnatal life. The counsellor should have a clear understanding of the principles and problems of the habilitation of children with limb deformities. It is also a good idea to have the parents visit the clinic monthly until the baby is ready to be fitted with the first prosthesis. The parents receive much benefit from the parental group meetings where they learn of the pleasures and problems encountered in rearing a limb deficient child from other parents.

Children's Division, Institute of Physical Medicine and Rehabilitation, New York University Medical Center, New York, New York

References:
1. Lesser, A. J. "Accent on Prevention Through Improved Service," Children, 11:13-18, 1964. 
2. Oppenheimer, E. "Population Changes and Perinatal Mortality," Am. J. Pub. Health, February, 1961. 
3. California's Health, California Department of Public Health, July 1, I960. 
4. Silverman, W. A. "Premature Infants," Hoeber, Inc., New York, New York, 1961. 
5. Perfect, K. "The Use of Parental Experience in Admission Procedures," Master's Degree Thesis (unpublished), New York University School of Social Work, 1963.