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Part 1 of 2 - How to talk about CHD: Two systems of self-regulation in “CHD families”

Updated: Feb 9

THE INNER, EMOTIONAL WORLD OF THE CHILD WITH CHD

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



The seminal article, “Play is the work of childhood”: Understanding the Importance of Play, issued a clarion call to reclaim and use the value of play and mental health in families

impacted by CHD. In the article, the brief story written by a nine-year-old boy living with CHD brought us to consider the ways that the inner, emotional world of the child becomes expressed, why it matters, what it might mean and how we are to respond. For this boy, the story was a creative, original production of his mind—bringing together Fact, Fantasy and Feelings within a playful displacement of a story associated with his own history and experience of CHD. The story signals us to recognize this child as a person calling out to understand himself and be understood. The realities, feelings and fantasies (internal, imaginary life) of children living with CHD must be taken seriously if we are to engage in the process of feeling and thinking about a child trying to understand and make sense of their CHD. I will adapt a contemporary model of self-regulation to the work of talking about CHD in a helpful manner with children living with CHD. Together, we will closely examine the ways in which we can foster an open-system (versus a closed-system) way of relating about and “unpacking” feelings, fantasies and fears within the child. I will demonstrate that while the focus here is on helping the child living with CHD, an open-system way of relating can benefit the entire family.


Bringing theory to practice with “CHD families”

Psychoanalysts Jack Novick and Kerry Kelly Novick, in their 2016 book, Freedom to Choose: Two Systems of Self-Regulation, lay out their innovative two-systems model of development and psychotherapeutic treatment of children, adolescents and adults. While written for therapists and those in the mental health field, the book “represents a collation of ideas that have emerged in relation to different questions and different challenges. We have come to see that organizing principles can be applied for understanding, but also for action. And when there is an organizing idea, applications can be tried, tested and improved” (Novick & Novick, 2016, p. xiii). To me, Novick & Novick has invited the field to expand their work into practical application, which I do so here with “CHD families”—a population with its own set of “questions and…challenges” to be attended to (Novick & Novick, 2016, p. xiii).

To begin, they introduce the idea that self-regulation is important and basic to all human beings:


“There is a fundamental need for homeostasis and mastery, which in turn underlie a sense of self and self-esteem. Each individual needs to feel safe, that his world is predictable, that his experience is encompassable, that obstacles can be overcome, problems can be solved and conflicts resolved. From infancy on, individuals can feel pleasure when such conditions can be assumed. However, when faced with overwhelming experiences, whether they originate from internal or external events, all people throughout life must find some way to feel good” (2016, p. 3).


For our purposes, we must consider threats to the stability and capacity for mastery within a “CHD family” and how to mitigate them—threats to safety, predictability, containment, resolutions to problems and conflicts, as well as feeling good amidst traumatic shocks and strains. Individuals and families vary in the degree to which they can talk about, think through and metabolize feelings. What is overwhelming, unspeakable or unthinkable for one person, may be entirely different for another. Parents bring their own history, upbringing, traumas, strengths, resources, level of psychological mindedness and ways of self-regulating to the task of parenting. Children, varying in age and developmental level, bring their own capacities for self-regulation and understanding the past, present and future realities confronting them or their family. It is when dealing with any trauma, including the life course experience of a loved one living with CHD, that the emotional muscles of every family member are stressed and put to the test. The Novick & Novick two-systems model “represents an effort to describe various ways individuals can and do actively seek safety, security and a sense of mastery to create a platform for survival, development and functioning” (2016, p. 4). Therefore, it is how an individual or “CHD family” actively seeks that safety, security and mastery that determines whether an open-system or closed-system way of regulating feelings, stressful events or family dynamics is succeeding.

Defining the open-system

On an individual level, an open-system of self-regulation involves an openness to and acceptance of the full spectrum of one’s feelings. A self-awareness of the interplay between one’s life events and inner, emotional life is valued and made use of in an open-system of self-regulation. Overwhelming or unpleasant experiences are met with reality-based solutions that can make use of relationships, “creativity, love, collaboration, hope, mutuality…and cooperation” (Novick & Novick, 2016, p. 6). In an open-system of self-regulation, there is space held for understanding that at its core, anxiety and depression are the tip of the iceberg and have underlying, under-the-surface psychological meaning. Anxiety and depression are viewed as emotional signals of something amiss, signals of feelings that are seeking expression and understanding, that for one reason or another, have been unable to be brought to the surface, named and worked with to a satisfying resolution. For example, discussed to the point that fearfulness and fantasies are replaced by realistic appraisals.

On a family level, an open-system of regulation is demonstrated through an openness to and acceptance of each family member’s unique and separate experience, feelings, fears and mind. For parents, there is an awareness of the importance of loving limits, clear expectations and demonstrating a united front. A child’s big feelings and states of overwhelm are met with curiosity, understanding and help aimed at making big feelings smaller and encouraging the verbalization of two-way feelings (e.g., feeling angry at their brother for all the attention he gets in the hospital and worried about him at the same time). The vicissitudes of family conflicts and troubles are framed as opportunities to exercise emotional muscles during quality time-with instead of sending the child(ren) away as punishment or to be left alone—time-without. In an open-system, play (as referenced at the beginning of this article) is understood as an avenue through which children express themselves as they work through big feelings in order to make them smaller and master challenging emotional experiences, including traumatic ones (e.g., a past hospitalization or the day-to-day experience of living with complete heart block and a pacemaker that might shock at any moment).


Defining the closed-system

On an individual level, a closed-system of self-regulation involves barriers against having or realizing certain thoughts or feelings. In a closed-system of self-regulation, self-awareness for how one’s outer life relates to and is integrated with one’s inner experiences and feelings is limited, and in an attempt to see themselves or the world a certain way, clings to certain beliefs that do not allow for change. Overwhelming or unpleasant experiences are met with magical, defensive solutions that eventually cause other problems. These may include externalization of blame and responsibility, projection of disowned aspects of one’s self onto others (blaming others for one’s own faults or fears), perfectionism and obsessionality, addictions, black-and-white thinking, denying time, avoiding life tasks or bossiness and controlling behavior. In general, feelings are openly expressed in action rather than talked about. Further, most everything “the person does is directed toward control of others. At various times in life, the individual has convinced himself that this defense is effective; indeed, there may have been times when it served as the best or only available adaptation to [uncomfortable and/or unwanted] circumstances.…We emphasize that closed-system functioning is not a deficiency or deficit; rather it is a solution”, or strategy of its own kind (Novick & Novick, 2016, p. 7). Within a closed-system of self-regulation, anxiety and depression are considered states instead of signals of needs to understand more deeply.


On a family level, a closed-system of regulation is demonstrated through controlling behaviors, scapegoating and a denial of recognizing each family member as having their own mind, feelings and position within the family. For parents, there are inconsistent, lacking or overly strict limits and unclear or mixed expectations. Additionally, the parental unit is conflicted and produces mixed messaging, increasing the amount of anxiety within the family. This contributes to the development of behavioral symptoms in the family as the sense of safety, predictability and containment is compromised. Especially in divorced or single-parent households, children can defend against their own feelings of helplessness through identification with the missing parent and their role, effectively becoming “parentified” and assuming an inappropriate amount of power through which to take defensive control. This can impinge development down the line. Big feelings and states of overwhelm are managed without much exercise of emotional muscles (e.g., exercising “thinking muscles” by helping children think through their feelings to make them smaller), defending against such feelings through distraction, minimization, denial of reality (e.g., secrets about what his sister is getting to do without him because he isn't allowed to participate due to health reasons) or an over-reliance on the use of the body to regulate feelings (e.g., a child being overly active as means to discharge emotional energy). In a closed-system of regulation, play is rigidly controlled, not flagged as a meaningful communication of the internal world the child nor as central to building emotional muscle (e.g., a parent ignoring their child’s artwork of scary hospital scenes because of their own anxiety).


Overview of Regulating Elements in the Two-Systems of Regulation:

Stories & secrets: analyzing a closed-system in action

Human beings are storytellers. As children, the stories told to us leave an indelible mark on the way we grow up to see ourselves, others and the world. Yet, it is the stories not told—experiences not recollected or put into words—that can be as, if not more, impactful. Take, for example, the discovery of a grown adult of their having been adopted as a baby:


Hilary Moon, 60, was 48 when she discovered that she was adopted. “I was at my uncle’s funeral when my cousin’s husband wandered up to me and said, ‘I’ve been wanting to meet you, because we’re both adopted.’ It was a huge shock – how could it not be? On the other hand, I had an instant explanation as to why I’d always felt like a square peg in a round hole when it came to my family.


"I once said to my mother, 'I've always felt like I was found on a doorstep.' She got terribly upset, and I later learned that was the point at which she confided in my cousin's husband. She chose him because he's a vicar. She assumed he'd keep it to himself.


"Was I angry? Of course I was. I had been advised not to have children because my mother and brother had both had severe diabetes and had gone blind and died early. To learn I wasn't blood-related to them means I made an enormous decision based on fiction.


"The whole situation has left me feeling neither part of my adoptive nor my biological family, and the lack of a sense of belonging in either can make me feel lonely if I let it. When people ask me who is my next of kin, I say, 'I haven't got one', because that's how it feels." (https://www.theguardian.com/lifeandstyle/2010/jan/02/adoption-children-family)


Here, Hilary recounts the “shock trauma” of finding out that the way she had structured core beliefs about her life—written her story until that moment—was based on a lie because her adopted parents assumed (wrongly) that no one in the family could deal with the reality. At the same time, finally having an explanation for why she had always felt different provided a deep validation of feelings she had always had and gave her huge relief. Anger for not being told about her adoption at an earlier age and having made major life decisions based on a “fiction”, as well as profound loneliness are some of the enduring impacts this secret-keeping played out on her life. Hilary was robbed of her emotional truth, tricked to believe a story that was not her own. Hilary’s family exemplifies a closed-system of regulation and its shortcomings.


If a conversation had started in childhood with Hilary about the realities of her adoption, assisting her to make meaning and co-create her budding story with someone there to help her write it, her life would have taken a much different course. Generally speaking, for that to have occurred, Hilary would have needed parents with some capacity to work through their own feelings about adoption, as well as engage the realities, feelings and fantasies that accompany talking about adoption with Hilary. Yet, what fears might the parents have had that so terribly paralyzed them from being able to speak the truth? We could wonder if perhaps it was better for her parents (in their minds) to not talk about her adoption than to risk being asked by Hilary why her birth mother didn’t want her—Hilary perhaps asking them, what was wrong with me that made mommy give me up? We could imagine Hilary’s mother worrying: What if Hilary rejects me as her adopted mother, turning the tables on her own feeling of rejection? …I just don’t want Hilary to feel bad or scared of being abandoned—we love her all the same, her life situation is all “fixed” now and she’s in a loving home. I will protect her from all this. She doesn’t need to know… Hilary’s mother’s act of secrecy and promotion of myth as though it was reality was a closed-system solution to control the storyline and protect herself, but did not, in actuality, protect her daughter.


It might seem out of place within an article concerned with talking about CHD with children to include an example of an adult woman not told about a major life event from infancy that is not medical in nature. However, this example positions us in such a way (and at sufficient distance from CHD, initially) to consider, with borrowed hindsight, the damaging implications of family secrets, lying by omission and the failure to correct pre-existing misconceptions. Questions abound: Why was such a secret kept (e.g., what did keeping the secret hide and protect in the parents’ minds), what rationalizations were made to support such an act, as well as what impact (conscious and unconscious) such a traumatic distortion in reality has had for Hilary along the way. How might we use Hilary’s story to think about similar anxieties as regards talking about CHD?

The process of sorting out and understanding feelings can help parents more comfortably and openly engage the thoughts and feelings of their children, especially as it pertains to CHD.

Frequently, parental anxieties about talking about CHD surround questions of how to engage the topic of their child’s congenital heart disease, while not scaring their son, daughter or any siblings. Hilary’s mother may have been fearful of rejection or being asked questions by Hilary that her mother was not prepared to hear or answer. Parents of children with CHD can experience these worries and others. For some parents, these anxieties arise upon some kind of triggering event in the life of their child, like news of an upcoming surgery, procedure or office visit, and/or a change in health. For a subset of these parents, the status quo of CHD being out of immediate awareness (because of their child’s asymptomatic or well-managed history) becomes disrupted—CHD demanding to punctuate into reality. For other families, the prominence of CHD in the storyline takes on a different dynamic depending on a variety of factors. In an open-system of regulation, parental anxieties relative to CHD do not become the burden of the child(ren), and anxieties in child(ren) relative to CHD do not induce anxiety in the parents. In an open-system of regulation, parents are the backstop against worries and closed-system solutions in the child, positioning themselves to help the child think through and transform their internal storyline adaptively. In a closed-system of regulation, parent and child anxieties are free floating and are not dealt with in a containing fashion. A parent may be unable to address their own feelings adequately to help the child, and the child may counter-react, hiding feelings to protect the parent out of a core belief they are dangerous, fragile and “too much” to handle. Feelings are then acted out by the child or lead to other symptoms. Parents that have not dealt with their own feelings about CHD will transmit them to their child(ren), as it will influence how a parent relates verbally and nonverbally. Children can pick up on this and will not know what to do with it. They will then proceed to fill in the gaps in their understanding with their own fantasies, which contribute to their own anxiety and uneasiness (e.g., generating fantasies and explanations for why they should be worried about their heart, etc.).



To exemplify some of these issues, we will now turn to child drawings, a way of accessing the inner world of the child with CHD. In the child drawing above, the parents appear to be feeling quite differently than the two children. We would wonder why this is and what it means to the child. Could this be a communication of parental feelings that have not been dealt with or talked about?



Above, a segment of another drawing tells us about how alone this girl feels with her heart defect and being bullied. We would wonder if her stating she is shy conveys that these are feeling that have been hidden, kept inside herself and not talked about openly. Whether this child's family is more of an open-system or closed-system of regulation will make a difference as to how easily such feelings can be attended to.



This drawing above leads us to wonder if there are not feelings going on under the surface. The description tells about a person feeling scared (and also makes note that the child is scared of drawing), however the picture shows a smiling face. Could this be a communication about how this child feels they must keep negative, scary feelings buried and only look happy and positive? Could this child be scared of drawing for what they might further express through their drawings that might be "forbidden" feelings, if it is true that they must only be happy? Who must they remain happy for? The parents?


These three drawings give us pause to appreciate the important role parents play in setting the stage for either an open-system or closed-system way of regulating feelings and emotional life both individually in the child and as a family. Next, Part 2 will continue with a careful analysis of how CHD can be talked about at each developmental stage, along with special considerations for each.


Bibliography

Novick, J., & Novick, K. K. (2016). Freedom to choose: two systems of self-regulation. Astoria, NY: International Psychoanalytic Books (IPBooks).

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