In dealing with the problem of the psychological management of children with birth defects, it is impossible to single out each kind of birth defect for discussion. There is a multitude of birth defects now known to medical science, and as the spectrum of research broadens, more and more physical problems are being connected with conditions that develop during gestation.
In my experience of dealing with the sequelae of birth defects- ranging from small hemangiomas, cleft palates, mongolism, and hearing defects to severe, crippling scoliosis- I find that guilt and anxiety are the two most important emotional reactions that require handling. It is absolutely essential for the pediatrician or physician dealing with the physical aspects of the birth defect to pay very special attention to the parents' guilt and anxiety as well as to the patient's anxiety and hostility. This can be accomplished only through the establishment of good communication between family and physician.
Good communication is the result of confidence in the physician by the patient and family and of the physician's sensitivity and understanding concerning the emotional factors connected with the birth defect. The latter is especially important since it is impossible to treat the physical aspects of the medical problem without taking into consideration the emotional component.
Perhaps the most common question a mother puts to the staff in the delivery room or following delivery is, "Is my baby all right?" This question reflects the new mother's anxiety about the possibility of having a child born with a birth defect. When the obstetrician congratulates the father, it is obvious that the father's anxiety is allayed when he is told, "Your baby is healthy and has 10 fingers and 10 toes!" Needless to say, during pregnancy, expectant parents think and worry about whether their baby will be born with any deformity, and they are terribly sensitive to stories they hear about defects others have encountered.
Today, more than ever, people have been sensitized to the importance of nutrition and to the hazards of ingesting any medication during pregnancy because of the possible irreversible harm these elements can have on a developing fetus. Twenty years ago, many health professionals may have laughed at expectant parents who expressed concern about too much radiation, the use of medication, or emotional stress during pregnancy and their effects on the developing fetus. We now take these factors much more seriously.
Not only is it the pediatrician's role to help parents deal with their anxieties concerning birth defects, but I think it is equally important, or in many ways even more important, for the obstetrician to accept parental anxiety and help provide knowledge that will alleviate or minimize it. Simply telling a patient, ""Don't worry, everything will be all right," is hardly reassuring to the person who has real questions based upon real facts and real experiences.
When a physician encounters a patient with what appears to be undue anxiety, I think genetic counseling should definitely be considered so that the parents have an opportunity to speak with an expert about all the possible hazards.
Once a child is born with a birth defect, parents invariably search their souls to find out what it is that they did to cause the defect. They immediately blame themselves, or at best, question everything that took place during pregnancy that might have contributed to or caused the defect. Everyone has done something in the course of his or her life that has aroused some feelings of guilt. When a child is born with a birth defect, most people may even carry the cause of the defect all the way back to whatever it is they feel they did wrong at one time or another.
Many families deny having feelings of guilt, but it has been my experience in dealing with these people over a period of time that they have encountered some thoughts or ideas that cause them to finally "indict" themselves for whatever went wrong.
Parents with guilt feelings about the child's deformity tend to overprotect the child and to make poor decisions about the child's rehabilitation and training. They tend to focus more on the child's defect than on his or her assets. This is a subtle way of helping themselves expiate the guilt they have for having "caused" the child's deformity. Raising healthy children, even under the best circumstances in life, is indeed difficult for the most competent parents. When guilt and a birth defect are mixed into this complex, it can lead to neurotic problems or character defects.
Anxiety also plays an important role when parents are concerned with the prognosis for their child- "Will my child develop normally?" "Will my child be able to have a normal family life?" "Will my child be able to go to college?" I think it is important for the physician to take these questions seriously and to help the parents honestly face up to these problems and questions. It should be the pediatrician's role to call in other specialists who can help parents gain some insight into the possible effects of the deformity on adjustment later in life.
In addition, it is equally important to recognize the patient's own selfconcept and anxiety regarding the defect and their effects on the patient's self-image. It is important for the child to have questions answered honestly. It is also extremely important to help a child understand in what way he or she is different from most other people and how important it is for each of us to feel a sense of individuality to help us with our own uniqueness. If a child is brought up in a context of values such as these, it is far easier to deal with a birth defect than if the child is brought up in an environment where everyone is compared and where high values are placed on conformity and general consensus.
Parents should be counseled to help deal with the child's questions so the child will in turn be able to deal effectively with the curiosity of other people. The child must be prepared to answer the questions of peers and to deal effectively with their comments and reactions. Peers can sometimes be awfully cruel in dealing with the child's deformity, and this can be extremely damaging to the child's selfconcept if he or she has not had the self-assurance a family can provide.
Finally, I think it is extremely important for the pediatrician to help seek out whatever facilities are available to help the child overcome the defect. Plastic surgery and cosmetic care can minimize the problems for a child with a hemangioma. A hearing aid can clearly help a child with a hearing defect, and corrective surgery can certainly help the child with a cleft palate or scoliosis. Psychological assistance at a time when corrective procedures are being considered could be a great help to the physician in dealing with the family. Such assistance can be planned when the negative effects will be minimal.
Clearly, the physician dealing with the child who has a birth defect has a great responsibility for the psychological management of the patient. Many people react to a child's emotional adjustment to a defect as if it represents an emotional problem. I prefer to think of these emotional reactions as being perfectly normal and appropriate, given the conditions of the birth defect in the first place. The child with a very deforming birth defect should be expected to have some emotional reaction to his or her deformity. It is stigmatizing enough for the child to have some kind of deformity without being further stigmatized by people reacting to his or her behavior as if he or she has an emotional problem on top of it.