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Understanding guilt in "CHD families": the how and why of guilt reactions in children and parents

Updated: Feb 9

THE INNER, EMOTIONAL WORLD OF THE CHILD WITH CHD

AUSTIN E. WILMOT, M.S.W., L.C.S.W.


Parents want to know their children are healthy and safe. When such an expectation is not met, such as through confrontation with the reality of a health problem in their baby or child, like CHD, a cascade of anxieties and emotional reactions is common and normal. In an attempt to deal with such feelings, the guilt reaction of parents is not uncommon. This guilt reaction has often times been discussed as “survivor’s guilt”, both in children and adults. In this article, I will call upon Richard Gardner’s paper, “The Use of Guilt as a Defense Against Anxiety”, as we explore guilt along many lines: (1) the normal development of guilt in the child, (2) adult guilt and (3) how the use of guilt as a defense against anxiety shows up in parents of a baby or child diagnosed with CHD. We will attend to the ambivalent feelings underlying the “inappropriate” guilt reaction in parents and the importance of working through unresolved feelings that can be detrimental, especially if transmitted in the rearing of the baby or child.


Defining appropriate and inappropriate guilt

Guilt is an emotion, often an uncomfortable one. Like all emotions, guilt is an important signal telling us something about our state of mind. The extent to which a person can feel guilt and how they act on it (or not) are indicators of mental health. We have seen or heard of courtroom spectacles where the defendant is found guilty of a crime, and when offered a chance to express his guilt and remorse, either does (positive indicator of mental health) or does not (negative indicator of mental health) acknowledge his wrongdoing and impact on others. Gardner holds that "[i]f the act or thought is considered “wrong” in the opinion of the majority of significant individuals in the guilty person's environment, then the guilt is considered appropriate.... If the consensus of such significant persons is that the act is not blameworthy, then the guilt is inappropriate" (Gardner, 1970, p. 126). An appropriate guilt reaction, as we will explore next, has its roots in child development. An inappropriate guilt reaction, or feeling guilty for something that one is not responsible for or had any control over, is important to understand, as well, for it can serve multiple functions and occur in children and adults.


The development of guilt in the child

An important goal of upbringing “is to inculcate in the growing child inner controls so that he can be relied upon to deter himself from behavior which may be deleterious to himself and/or society” (Gardner, 1970, p. 125). Gardner breaks down the process of the development of guilt into three stages: (1) the pain stage, (2) the shame stage and (3) the self-blame/guilt stage. Below, I have consolidated this process into a chart from Gardner’s work:


For Gardner, "[e]ach stage contains two essential elements: (1) the wrongdoing and (2) the parental punishment. The latter, be it in the form of rejection, withdrawal of love, castigation, chastisement or any of the commonly used disciplinary measures, is the original punitive element in guilt. As the child develops, he encounters an ever-growing horde of figures, each empowered to punish him for his transgressions. Although punitive fear may be repressed or unrealized, it is never completely lost in the guilt reaction" (Gardner, 1970, p. 126). While Gardner’s perspective is helpful, not all of guilt development is based on punishment and fear. Parents are also teachers and instill education and understanding.


A child that can self-regulate (think through feelings instead of expressing feelings only through behavior) and feel appropriate guilt is on track to becoming an adult who can act thoughtfully instead of impulsively. Conversely, a child whose healthy development of guilt is derailed (perhaps by growing up in a closed-system of regulation) presents a risk of becoming an adult who will act in ways that will unconsciously provoke the environment to come down on them—punishing them like a child—in order to relieve an inner sense of badness, guilt and anxiety. The adult, not having successfully worked through the development of internal controls in childhood, will have difficulty holding oneself to limits and boundaries and will act on those internal issues (e.g., manifesting as issues in adulthood with finances, legal issues, addictions, relationships).


A common example of inappropriate guilt in children

When children experience parental separation or divorce, it is traumatic to their world. Even when told that they are not the cause for the change in the state of the parental relationship, they always assume some level of responsibility, and, in so doing, feel at fault. Explanation from another point of view does not fully protect from a guilt reaction. In the child’s internal world, a chain of associations cannot help but come together: “Mom and dad don’t want to live together anymore. Why? What did I do? It is my fault that mom and dad don’t want to live together anymore. I must have done something to cause this, and, therefore, can also do something to bring them back together.” Children reason at their developmental level. Egocentrism is the inability on the part of a child to see any point of view other than their own. Adolescents and adults experience degrees of egocentrism, as well. Since children have no option, no say in how their family world is changing, they do not have control of it. Personalizing the separation or divorce (i.e., making it about them) allows the child, through magical thinking, to take back some measure of control, defending against feelings of helplessness that would rather not be felt. It is a solution to dealing with such overwhelming feelings, to turn a situation outside of the child’s control into one of fantasied control by taking responsibility for it. Might this help us understand the inappropriate guilt reaction of parents learning of a CHD diagnosis in their baby or child, as well?


Children are familiar with understanding that most events bringing unpleasant feelings have, in actuality, been their fault, with the parents coming down on the child in some way in order to correct a problematic behavior. When news of separation or divorce comes down, the child cannot help but assume the default position of being the cause of their unpleasure, personalizing it. For example, a parent reacting to their child running towards the street, and perhaps being physically restrained, while an act of love, is taken “personally” as the child doing the wrong or bad thing.


CHD brings about existential anxiety

We all employ defense mechanisms to get through life. Operating mostly unconsciously, our defenses against unpleasant thoughts and feelings help stabilize us and regulate our ability to function and carry on with the activities of living. When, for instance, the flight attendant begins their safety feature presentation and asks passengers to review the safety card in the seatback pocket, we are invited to lower our defenses enough so that we might take seriously and consider (1) the possibility of a crisis occurring outside of our control and (2) what we might be able to do about it. This presentation usually goes ignored, or we flip through the safety instructions without really thinking much about what it has to say—without really imagining ourselves in the role and circumstance presented. We expect the flight to go without incident. “These things only happen to other people, not me” encompasses the standing logic. Even if one does take a closer took, the pictures most often portray normal-looking human figures happily and orderly escaping an aircraft surrounded by water by way of the emergency slide or show smiling passengers all wearing oxygen masks. The portrayal of these life-threatening situations is such that a more accurate truth is obscured to some degree, protecting us from a more realistic picture and anxious predicament. We are fed a more palatable story and we go about our flight just as we usually do, expecting no incident.


Learning about a CHD diagnosis “onboard” a family’s journey of growing their family is an unexpected incident. CHD occurs in approximately 8.1 out of 1,000 live births in North America—that is about one out of every 120 births (Reller et al, 2008). When we speak of congenital heart disease, we refer to an abnormal development of the cardiac muscle that has yielded defect(s) in its form and/or function, present before and at birth. Since that development occurs in utero, malformations must be genetic in origin with, at present, a variety of known, non-genetic risk factors. While there are many kinds of developmental processes for which we can claim a notable measure of control, the blueprint of one’s cardiac development is not one. Because of this, CHD brings about the experience of existential anxiety and feelings of helplessness and powerlessness in a parent learning of a CHD diagnosis. Existential anxieties are those “...regarding death and harm[,]…as well as from overpowering forces of nature. They are the anxieties which man experiences as the result of his relative impotence in controlling these inevitabilities” (Gardner, 1970, p. 124). To examine this, I share below a mother's reflections on her baby’s birth and some of her early thoughts and reactions:


M: I was not prepared for anything other than bringing a child home healthy from the hospital. You plan over the 9 months of doing the nursery and doing all the things you can to bring your new member of the family home to their own room—and that is what you are prepared for. You are prepared for the beginning of a new life in your home. And when everything goes cattywampus at the hospital, you are told that they don’t know what’s wrong with your baby and the baby has been whipped away from your arms the minute you gave birth. You are told absolutely nothing and you are still somewhat under anesthesia. My husband is probably the only one who knew anything. So, at that moment as a parent of a baby with CHD (but do not know yet), you are confused. You are bewildered. You have absolutely no idea why things aren’t going as you thought they were supposed to go in your mind. You are just not prepared for anything other than healthy children.


Wilmot: Can you say more about the self-blame that occurs in parents?


M: Any parent who does not come home with a well child...and I mean you’ve carried and coddled and taken care of that baby while they’ve been intrauterine. You don’t smoke, you don’t drink, you exercise, you eat good foods, you do everything you possibly can...and that baby doesn’t come out healthy... The first thing you do is you blame yourself. What did I eat? What did I do wrong? Ooh crap, I ate sushi. Was that my problem? No. I never got sick on sushi.... So, the point is, when you come home with a child that is not perfect and can’t come straight home from the hospital, the first thing a parent does is blame themselves. And I did. I kept thinking I did something wrong. I just could not imagine that he was not coming home from that hospital and going to live in his room and go and live with his dad and I and we weren’t going to have a family. That is what it was supposed to be about. I was supposed to have a son—and come home—that calls me 'mom' and I wanted him to say 'dad'. And I wanted the three of us to have the most incredible life and I was not prepared for anything but that.


Parental guilt in "CHD families": two perspectives

Gardner "has observed that most parents of children with severe illnesses, such as leukemia, cystic fibrosis, cerebral palsy, brain injury, etc., at one time or another exhibit an inappropriate guilt reaction concerning their child's illness. Typical comments include: “It's my fault he got measles encephalitis. I shouldn't have sent him to camp.” “We had sexual relations during the last month of my pregnancy. Maybe that did it.” “God punished me for not going to church” (Gardner, 1970, p. 131). We will now look at two perspectives on the assumption of guilt in parents of a baby or child diagnosed with CHD.


(1) Guilt due to fulfillment of unconscious hostile wishes

As socially unacceptable as it might be for a parent to acknowledge any hostility towards their own baby or child, such feelings are in the realm of normal human emotion. In fact, "[m]any nursery rhymes originating in eighteenth-century England express cleverly disguised hostility.... For example, the baby on the tree top in "Rock-a-Bye Baby".... The king wanted this child to inherit the thrown, but if that took place—so the rhyme goes—baby, cradle (meaning the thrown), and all (the whole dynasty) would come crashing down" (Lazarus, 1994, p. 230). Today, lyrics sung softly as a lullaby, help the parent to safely release hostile feelings and frustrations that come along with being a parent:


Rock a bye baby

In the tree top

When the wind blows

The cradle will rock

When the bow breaks

The cradle will fall

And down will come baby

Cradle and all


One perspective on the inappropriate guilt reaction holds that unconscious hostility toward the baby or child is present and that the illness represents the magical fulfillment of these unconscious hostile wishes—therefore the guilt. Freud considered there to be a constant association between repressed hostility and guilt. Anger towards a colicky baby is one thing, however enough stress can push any good-meaning parent to experience a variety of thoughts and (hostile) wishes in response to circumstances outside their control. While perhaps felt as unsayable, hostility towards an unwanted baby or child would be one way the groundwork is laid for later guilt when it is felt, on some level, that it was one's own wishes and feelings that "broke" their heart.


(2) Guilt as an attempt to control

A second perspective on the inappropriate guilt reaction aligns with the earlier example of how children personalize parental separation and divorce to turn a situation outside of their control to one of fantasied control. Gardner states, "[i]f the classical hypothesis [(1) above] were the only correct one, one would have to assume that most parents are secretly (unconsciously) so hostile that they wish their child to have suffered the catastrophic illness. One plausible alternative explanation is that the guilt might be an attempt to gain some control over this calamity, for personal control is strongly implied in the idea: “It's my fault.” With such guilt the individual is convinced that he had the power to prevent the illness. Also implied is the ability to avert its recurrence in the sick child, its appearance in siblings, and possibly even in the parent himself. The inappropriate guilt may stem then not from hostility but from love and affection, from the desire to see the illness undone and/or prevent it in the future" (Gardner, 1970, p. 131). While aspects of Gardner's explanation may not be applicable to the specific nature of CHD (e.g., recurrence in the child, sudden appearance in siblings or the parents themselves), a parent blaming him or herself for their baby's heart defect is a parent dealing with overwhelming feelings and anxiety wanting desperately to turn the tables on those feelings. Experiencing guilt is then an unconscious attempt to deny or undo this passive helplessness. Guilt “presupposes the presence of choices and the power, the ability and the possibility to exercise it” (Danieli, 1984, p. 38). The interview of a mother shown earlier in the article captures such distress and confusion. Such a parent, likely in a state of trauma, is attempting to find some certainty in a situation that is so uncertain, unexpected and unexplainable. Assuming personal responsibility for a son or daughter's CHD gives a sense of power in what is a powerless circumstance.


Thinking from an attachment point of view, the baby has been inside mother for months. The baby has not individuated yet. Psychologically—symbiotically –baby is mother. There is an emergent sense that "if my baby is damaged in some way, then I must be damaged and I must have caused the damage.” What happened inside me to cause this? Am I dangerous in some way? These parents, being in such a vulnerable and fragile state, cannot help but engage in self-blame when experiencing the sense that I/we created something defective together.


Ambivalent feelings generate anxiety

Ambivalence is defined as “the state of having mixed feelings and contradictory ideas about something or someone”. Having conflicting or opposite feelings generates anxiety, which is a state we prefer to avoid. We see examples of this in children and adults. For instance, a child is told "no" to playing with friends, which elicits full-on hatred of the parent (an all-or-nothing response). It is a little while later that there is a complete reversal with full-on love, attempting repair for fear of having damaged the parent by way of the earlier attack. Normal child development involves the building-up of emotional muscle allowing the child to hold two-way feelings in mind and tolerate greater amounts of frustration and ambivalent feeling states. This is seen as little Johnny experiences the ability to be angry towards a peer, while being able to hold other pleasant feelings and thoughts in mind about their relationship, resolving himself to not acting out the anger by pushing or hitting. An adult might act out similar patterns with a friend or partner—in ways having difficulty holding in mind a more complex and nuanced view of a person. Many relationships end due to difficulty in tolerating ambivalent feelings and working them through together. In fact, difficulty tolerating ambivalent feelings is the greatest threat to relationship.


In the case of parents learning of a CHD diagnosis, the soil is fertile for ambivalent feelings that can become intolerable to hold in mind (e.g., what was expected and imagined does not become reality). When feelings become intolerable to think through, we consider them to be unresolved. There are always unresolved feelings undergirding an inappropriate guilt reaction, undergirding “survivor’s guilt”. It is these feelings that require working through in order to be freer emotionally, especially to one's baby or child. It is not possible to process these feelings without the necessary emotional space and safe and trusting relationship(s). The immediacy of dealings in the hospital environment, any ongoing trauma or anticipated loss makes difficult this kind of reflection on thought and feeling as long as significant stressors are active.


Unresolved feelings

A parent that is busy blaming his or herself for their baby or child's CHD is a parent struggling to accept reality and accept back into their mind painful feelings that were originally shelved in favor of self-blame and other ways of coping. A parent may be stuck with angry feelings towards the hospital, the world-at-large or their spouse. A parent may be angry at CHD, itself, or angry at the baby or child for not being what they wanted. Regardless of the many ways that a parent's unresolved feelings become projected and externalized, fully accepting one's feelings about the diagnosis is important to fully accepting the baby or child. Feeling and moving through guilt and anger is a normal part of the grief process. This acceptance fosters positive, secure attachment versus an ambivalent, anxious or avoidant attachment style. The way in which a parent holds their son or daughter in their mind will be reflected in how that parent physically holds that baby or child and interacts and attaches, as well.


A parent holding onto a fantasy of a heart-healthy baby is more inclined to relate to CHD as something that can be fixed, since if the problem is fixed then CHD can be put out of mind and one can go on pretending as if the baby is heart-healthy. One danger of this is that the parent proceeds to relate to the baby like he or she is a normal baby, not one that is likely traumatized and in need of an approach that understands the impact of medical traumata on all aspects of care, including feeding, physical touch and environmental stimulation, to name a few. The parent, numb to the signals the baby is giving off, does not pick up on cues that would indicate a mismatch in the parent-infant dyad. A parent is likely to over-feed or over-nurse in this scenario. This parent's discomfort with CHD will transmit to the growing child as an inability to think and feel about one's CHD, instead feeling a more diffuse sense of something wrong or defective with them as a person.


A parent holding onto a fantasy that their baby's CHD is a punishment coming down from outside themselves in response to their own fantasied transgression (e.g., God punishing me for having an abortion earlier in life, not going to church, being catholic and divorced, etc.) is more likely to keep baby at a distance, hold baby in a turgid fashion and not pick up on the baby's cues accurately. The parent, out of a fear of the infant, feeling the infant to have power over them (perhaps be demanding of them), has difficulty attaching and enjoying the acts of mothering or fathering. This parent's anxiety is transmitted to the growing child as an impingement on their relationship and generates a sense of their being dangerous (e.g., after all, the parent held baby at a distance versus relaxed and close) and a view of CHD as negative, oppressive and isolating versus a positive, empowered and connected identification.


Working through unresolved feelings fosters an open-system of regulation. While there is no doubt that therapeutic conversations can take place among family members and close friends, seeking out professional help, such as a therapist, is a helpful step in addressing problematic relationship patterns not finding resolution otherwise.


Bibliography

Danieli, Y. (1984). Psychotherapists' Participation in the Conspiracy of Silence About the Holocaust. Psychoanal. Psychol., 1(1):23-42.

Gardner, R.A. (1970). The Use of Guilt as a Defense Against Anxiety. Psychoanal. Rev., 57(1):124-136.

Lazarus, R. S. (1994). Emotion and adaptation. New York: Oxford University Press.

Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998–2005. J Pediatr. 2008;153:807–813.

© 2020 Congenital Heart Defects Families Association. All rights reserved

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