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Children’s books in “CHD families”: don’t judge a book by its cover

THE INNER, EMOTIONAL WORLD OF THE CHILD WITH CHD

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


You cannot judge a book by its cover

This is the first article of an ongoing series pertaining to the review of children’s books materially related to the experience of “CHD Families”. Two titles were picked at random from Amazon and reviewed using criteria of import in the professional literature. The intent of these reviews is to critically explore the utility of children’s books for children living with CHD and their families. Children’s books have the potential to penetrate tough topics, acknowledge and validate difficult feelings and demonstrate resolve to common conflicts that arise in the lives of children living with CHD and their families. Children’s books also have the potential to harm, such as when common misconceptions about CHD are perpetuated or the emotional experience of living with CHD is ignored. Thinking critically about what we are reading and what we think would be helpful for our children to read is crucial to promoting an open-system of regulation in CHD families.


(1) Born With A Broken Heart


Title: Born With A Broken Heart

Authors: Rick and Annette Gallegos

Year of Publication: 2010


Description of the Content

The book tells the story of a daughter and her parents in anticipation of their soon-to-be baby boy, Alex, whom is discovered post-birth to have a hole in his heart requiring immediate surgery. Alex undergoes a second heart surgery at one-year-old and learns to walk before his second birthday. Several days after, Alex dies.


Definition of the Audience

The book speaks primarily to the parental experience of a son’s two years of life living with CHD, from birth through medical interventions to death. The book also speaks to the school-aged (approximately age 5-7) sibling experience.


Info Re: Scope, Tone, Style, Point of View

Scope: Linear chronology, course-of-events focused, limited reference to feelings

Tone: Observant, neutral, matter-of-fact

Style: Past-tense, first-person

Point of View: It is written from the perspective of the older sibling (sister). The estimated age of the sibling is 5-7 years old.


Comparison with Similar Works

Deferred – This book will be compared with others told from the sibling perspective.


Appropriateness of the Art to the Text

(+) – Large, colorful drawings with appropriately congruent facial expressions of pain and distress, as well as joy, sadness and concern

(+) – Detailed, well-illustrated in-hospital equipment, tubes, bandages and other items provide for a realistic depiction of the bedside medical scenes


Reviewer’s Personal Opinion

Born With A Broken Heart was written by parents whose son, Alex, born with CHD, suddenly became ill and died at two-years-old. The book tells a story of their son’s short life by recruiting-as-narrator their daughter into the role as Alex’s older sister (the vantage point the story is told by). They disclose at the end of the book that, in reality, “… she is actually Alex’s younger sister.” In fact, Alyssa was born ten months after Alex’s death, per their “About the Author” section. Seeing that the book was published in 2010, Alyssa was approximately the age of Alex when he died when the book was released. Since the reader is offered this information, it enables us to wonder about how the motivation for this book may have arisen from the grief process for these parents, especially given how rapidly after Alex’s death Alyssa was conceived. The book may also be thought of as a way for these parents to tell the story to Alyssa of her brother’s life, concretizing and memorializing a part of their family to be remembered.


The book is commended for its beautiful, “experience-near” illustrations that capture the infant’s environment from hospital bedside. Instead of shielding the reader from tubes and equipment or hiding a variety of associated facial expressions and anxieties—which would have created a false, watered-down clinical situation—the imagery allows the story to be considered seriously at an age-appropriate level. The content of the story, however, raises concerns, which I will elaborate.


Can CHD be “fixed”?

There is a common misconception of how CHD can be “fixed” that is perpetuated in the storyline. The word “fix” is used three times in the story, as well as spoken directly in a message “[t]o children with Congenital Heart Disease (CHD)” in the beginning of the book: “There are a lot of children that are born with heart conditions who have to have surgery to fix the problem.” While we frequently speak of fixing problems in all sorts of ways, and can be done so appropriately, CHD is particularly vulnerable to being misunderstood as a condition that can be “fixed”. This kind of language can be confusing when a second heart surgery arises (e.g., if his heart was fixed already then why another surgery?). The story does not provide for the kind of basic explanatory framework for a condition that requires lifelong care. In contrast to this, the progressive movement in the story from the heart surgeon first relating to a “owie in his heart” to a “hole…that needed to be repaired”, and finally a picture of a normal heart versus Alex’s heart was commendable. This demonstrated a solid example of how to convey the meaning of such a heart problem to a young child in steps.


Talking about death and feelings

The story begins with a statement that “babies come from heaven” and ends by saying “…children with heart conditions have surgery to fix their hearts. Most get to go home and live long, happy lives. Others, like Alex, go to heaven.” The religiosity embedded in the story is not for all families. Regardless of the family’s religious beliefs, such explanation can generate questions and fantasies in the surviving child, such as when the sibling will be returning from heaven, if the surviving child can go to visit and other such imaginings that can impinge on a child’s grief. Parental anxieties about talking about death directly (and dealing with their own grief) can hinder their ability to help surviving children with their own feelings related to the loss of a sibling. We see this when parents tell their child how to feel, as in a closed-system of regulation, instead of eliciting the child’s actual feelings and exploring them, as in an open-system of regulation. In the book, the fact Alex has died is not communicated directly. The parents had told their daughter “…don’t be sad….He would not want anyone to feel that way because he is happy in heaven.” It would be crucial and therapeutic for a children’s book to communicate an acceptance of sad feelings, validate them and encourage their expression. This book fails here to help children with their own grief. The book focuses almost entirely on the parents’ experience (witnessed by the daughter), essentially neglecting and minimizing the sibling experience and associated feelings. Additionally, the only “I” statement to come from the narrator occurs at the outset of the story, profoundly limiting the book’s therapeutic utility. The story does not offer space for a reader-sibling to identify with a model-sibling able to find their own words from their own mind regarding the full range of feelings that occur in such traumatic and stressful periods. For instance, the story does not display the parents comforting their daughter or attending to her separate experience. We might wonder if this is because the parents are telling a fiction—the story of a daughter present during Alex’s life, when there was none. We would wonder if the parents are attempting to deal with their own grief through telling Alyssa, their “little healer”, about their experience.


Strengths and Weaknesses

(+) – Art quality; comparison illustration between a normal heart and Alex’s heart

(–) – Lack of reference to the thoughts, feelings and inner experience of the narrator-sibling herself – her own mind is absent from the story


Uses of the Work

In the authors’ “About the Book” page, they relate their “hope that this book will give parents and children the opportunity to learn about Congenital Heart Disease (CHD) and to spread CHD awareness throughout the world.”


The story offers a means of connecting with the experience of a school-aged sibling (approximately age 5-7) impacted by the loss of a toddler-aged brother or sister afflicted by CHD.


I do not recommend the book for this purpose as it falls short of addressing the emotional experience of the narrator-sibling.


Brevity

While a 26-page story, there is approximately 25 additional pages following the story with dedications, memories and other references.


Judgment of Literary Quality

The story flows from page to page with easy progression and simple language.

(1) Zip-Line


Title: Zip-Line

Author(s): David Humpherys

Year of Publication: 2012


Description of the Content

The book shows a school-aged (approximately age 6-9) girl explaining her scar—its meaning and significance to her—to an undefined other (perhaps a peer-reader).


Definition of the Audience

The book speaks primarily to a child living with CHD whom can benefit from identifying with the girl’s ability to tell about her scar.


Info Re: Scope, Tone, Style, Point of View

Scope: Limited to one speaker, modeling of how a scar can be explained to a curious other

Tone: Engaged, conversational

Style: Present tense, first person

Point of View: It is written from the perspective of a school-aged girl (approximate age 6-9) living with CHD.


Comparison with Similar Works

Deferred – This book will be compared with others told from the child living with CHD perspective.


Appropriateness of the Art to the Text

(+) – Simple illustrations limit distraction from the book’s message

(–) – No change in facial expression of the girl; scar-as-shown is small, relatively hidden with no additional effort to show a diverse array of scars or a larger area of the same scar (e.g., another type of bathing suit than the one illustrated)


Reviewer’s Personal Opinion

I presume Zip-Line was written by a father who dedicated the book to his daughter, Ella, presumably the girl in the story. The book is written from the perspective of a girl who makes known her scar down the center of her chest to the reader-made-audience. Without an other person in the storyline, there is no actual dialogic flow. Rather, the girl tells “you” (the reader) about her scar, referenced past page 8 as a “zip-line”. There is a sharing of positive meaning regarding the scar as it is referred to as a “personal work of art” and a “trophy for being strong and brave”. While commendable, the book neglects to reference CHD within the story or by inclusion of any added information section. The story does not model a child with demonstrated understanding about her specific heart condition and how that knowledge could be shared. There is also an absence of any feelings discussed relative to the common conflicts that arise either in the child about their scar and outer appearance, or in the midst of the social milieu, an increasingly important developmental focus of the school-age group.

The product information for this book (assumed to be written by the author) appears to confirm the sense that this book was doing “right” by steering away from helping school-age children talk about the realities of CHD and the common feelings of children living with CHD. The author appears to be on a path in this book of rendering CHD invisible at the same time that he seeks to make visible the outer evidence of a “zip-line”. The Amazon product information is quoted here: “The story centers around a little girl and her bunny rabbit explaining to the reader how she got the scar on her chest and how she isn't any different than anyone else. It shows her unrestricted in activities and features age appropriate illustrations - no blood, or anything remotely graphic. It aims to set a model for kids with a CHD to be comfortable with themselves, their heart scar, and the surgery that they were too young to remember.” First, the idea that “she isn’t any different than anyone else”, invites a kind of denial of reality regarding CHD, as does the common assertion that one is “too young to remember” surgery as a baby. It seems this author wishes to keep much from being thought about (e.g., the misconception that if my child does not remember her surgery, then there is no psychological, emotional impact or medical trauma to be thought about). We would wonder if this is an example of where a parent-author’s own anxiety about feelings or about CHD itself can impede the healing opportunities that writing a children’s book offers to readers.


Can CHD be “fixed”?

Again, our attention is turned towards the implication of language in explaining CHD. There is a common misconception of how CHD can be “fixed” that is perpetuated in the storyline. The word “fixed”, used one time in the story, comes up on page 7 when she states that “doctors fixed my heart”.


My previous opinion on this particular issue, I repeat here for ease of reference: While we frequently speak of fixing problems in all sorts of ways, and can be done so appropriately, CHD is particularly vulnerable to being misunderstood as a condition that can be “fixed”. This kind of language can be confusing when a second heart surgery arises (e.g., if his heart was fixed already then why another surgery?). The story does not provide for the kind of basic explanatory framework for a condition that requires lifelong care.


Strengths and Weaknesses

(+) – Normalization and modeling of a difficult conversation

(–) – Limitation to art work detail, exclusion of feelings and lack of explanation of CHD


Uses of the Work

The story offers a means of somewhat navigating the common anxiety of one’s scar becoming noticed through sharing one girl’s way of explaining the meaning and story of her scar. I do not recommend the book for most readers. While I find that the only utility of the book concerns female, school-aged children (approximate age 6-9) living with CHD who could largely identify with the girl in the story, the book’s inability to language basic consciousness of CHD and any feelings makes it difficult to perceive marked benefit.


As follows, additional rationales structure the lack of recommendation of this book. I do not recommend the book for male children because I would rather recommend another book that allows for identification with a male character. I do not recommend the book for a child whose scar(s) are more extensive than the one shown. The book may be experienced as minimizing feelings of embarrassment or shame if the limited display of scar does not resonate with another child’s perception of their body image. This is compounded by how no feelings are discussed in the book. I also do not recommend the book for a child who is not able to claim they are doing as well as the girl claims in the book (e.g., she states “I’m really doing fine” and goes on to give the impression of no notable limitations). This book does not serve children living with CHD with notable physical restrictions or active concern about their health.


Brevity

This is a 20-page story.


Judgment of Literary Quality

The story flows from page to page with easy progression and simple language.


Concluding remarks

What I feel will be interesting about this series of articles tasked with the exploration of the universe of children’s literature for the CHD population is discovering and mapping the literary landscape. Much like with CHD and mapping the heart and its ways of functioning, the defects in the heart of this important literary set will be closely looked at. Only when we understand what is wrong can we begin to fashion a solution and determine what is missing or being approached from the wrong angle in the hearts and minds of children living with CHD. Born With A Broken Heart and Zip-Line share similar defects. In the interest of understanding these issues, I have categorized these types of defects as “defensive defects”. Defensive defects are ways in which the writing of a children’s book has been impacted by the writer’s own defensiveness or unresolved feelings that impinge on the writing process. Defensive defects can affect aspects of writing, which I have organized below into five categories with associated examples from this review. You may review the actual opinions above for further details.


(1) the ways CHD is discussed (or not) and the associated language used

Born With A Broken Heart

“fixed” language prominent

Zip-Line

CHD not discussed; “fixed” language


(2) the extent to which feelings are named, brought to expression and thought about

Born With A Broken Heart

Virtually no feelings discussed

Zip-Line

No feelings discussed


(3) the capacity to write from an empathic position versus a narcissistic position

Born With A Broken Heart

The writing appears to portray a sibling-narrator who is focused on the parents’ experience and lacks her own mind and feelings, causing one to question the motivation for the book

Zip-Line

Since no feelings are discussed, it is difficult to see how the story could truly help children with CHD feel understood with their myriad feelings about their scar(s) and CHD


(4) the reality of whether meaningful themes of experience are addressed in an age-appropriate fashion

Born With A Broken Heart

The experience of a sibling surviving the death of a sibling diagnosed with CHD is relevant

Zip-Line

The common concern or worry about having one’s scar(s) noticed is relevant


(5) the promotion of appropriate (or inappropriate) defenses in the reader

Born With A Broken Heart

Promotes anxiety of talking directly about death and associated feelings

Zip-Line

Promotes use of denial in favor of wishing to appear as normal as possible besides having a “zip-line” (a “nothing to see here” stance without a need to actually talk about CHD—in fact, no physical limitations to be discussed either) *While “Zip-Line” may seem of utility, we would wonder who first came up with this term—parent or child? There is a strong possibility that while the term is fitting (as we might think “heart warrior” is), it also promotes avoidance and distancing from the reality of “scar” (or, in the case of “heart warrior”, something else that seemed to necessitate change in language). Who is anxious about talking about a scar as a “scar”—parent or child?


While books cannot replace the quality time-with that comes with a parent sitting down to listen and talk about important realities and feelings surrounding CHD, they can augment diverse topical areas and offer support and understanding in ways that, perhaps, a parent cannot. We will continue to learn over later reviews what other terrain exists across this literary landscape.

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