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The Arts and Medicine
November 14, 2017

Beyond Heart Symbolism: Artistic Representation of Narratives of Congenital Heart Disease

Author Affiliations
  • 1Bristol Heart Institute, University of Bristol, Bristol, United Kingdom
  • 2GOSH Arts, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, United Kingdom
  • 3Great Ormond Street Hospital for Children, NHS Foundation Trust, London, United Kingdom
JAMA. 2017;318(18):1740-1742. doi:10.1001/jama.2017.14285

…only a moving image created by ultrasound could echo [the heart’s] sound and shape, could make visible the joy that dilates it and the sadness that tightens it…

M. de Kerangal, The Heart, 20171

The heart is an organ charged with extraordinary symbolic value featured in art across time. Contemporary clinically rooted representations of the heart have appeared recently in UK exhibits by fashion and portrait photographer Kirsty Anderson, who mounted a photograph display of patients with congenital heart disease (CHD) at Kelvingrove Art Gallery and Museum in Glasgow accompanied by first-person stories relating to each portrait; and by artists Tim Wainwright and John Wynne, who employed photography, film, and sound to recount the experience of transplantation and organ donation at the Hunterian Museum in London. In both cases, the voice of the patient was an integral component of the artwork itself. Here we describe how a participatory arts practice led to co-creating original artwork incorporating the voice of patients and families.

Detail of a metal plate embossed by a patient with congenital heart disease. A spinach leaf represents food that cannot be eaten because of anticoagulant medication.

Image courtesy of George Eksts. Reproduced with permission.

With Heart Narratives, a 165 × 85-cm wall-mounted panel, British artist Sofie Layton aimed to represent the language and narrative of CHD. Layton was artist in residence in 2015-2016 at Great Ormond Street Hospital for Children in London. On the hospital ward or through creative workshops,2 the artist worked with families and medical personnel treating CHD to explore imagery and to develop a visual representation of their narratives of illness. Participants included children with CHD (adolescents with repaired defects, including transposition of the great arteries, tetralogy of Fallot, and hypoplastic left heart syndrome); parents of newborns or infants on pediatric cardiac wards with diagnoses of hypoplastic left heart syndrome and DiGeorge syndrome; and researchers and practitioners.

The panel is composed of equally spaced A6-sized metal plates (either copper or aluminum), screen-printed with a heart image in a range of colors and sizes. As part of the process, participants were invited to choose a plate that most resonated with them in terms of material and color, and they then embossed it with elements directly relating to their narrative. Small images delicately embossed around a central velvet-flocked heart thus become symbols for ambitions, memories, desires, and states of being. Shining suns, whirling spirals, spinach leaves, brick walls, the stripes of a tiger—they all tell stories. Burning flames speak of aspirations and resilience in adolescents that grow up with CHD. A spinach leaf tells a story of acceptance that a favorite food cannot be eaten because of anticoagulant medication. And interposed between these stories, the artist has placed direct quotes from conversations that took place on the ward or during workshops—very few, yet resonating, words: “My new heart is red and it pumps”; “My daughter was born with half a heart”; “My heart is a soldier, it’s been through wars but it’s still fighting, and I am really proud of it.” The result is less confrontational than an approach that may use a medium like photography to directly document or represent the effect of living with CHD. But it is the experiential component that shines (literally)—stories that have been collected and represented by an artist who effectively becomes a conduit for the stories themselves.

The Heart Narratives panel created by artist Sofie Layton during her residency at the Great Ormond Street Hospital for Children in London.

Image courtesy of George Eksts. Reproduced with permission.

The setting for the piece was an important consideration. In discussing the witnessing of the pain of others, Susan Sontag wrote that images of pain “demand the equivalent of a sacred or meditative space in which to look at them.”3 The panel was part of a site-specific installation4 created by the artist in the gallery-like corridor linking Great Ormond Street Hospital to the adjacent Institute of Child Health (University College London). By placing the artwork in that physical link between the hospital and laboratory, between patient and researcher, the artist sought to engender a strong feeling of the interconnectedness of patients, families, researchers, surgeons, and nurses, and highlight a broader collective narrative beyond the tens of stories represented on the panel (whether embossed or quoted directly) linked to the space in which those stories developed.

Placement in the working corridor, rather than in an exhibit space, also meant the installation could be directly experienced by medical professionals and researchers who could reflect—even in passing—on the choral piece or on elements of individual stories. As it emerged, hospital staff were struck by the beauty of the artwork, considering its content and its context.5 One clinical nurse specialist remarked, “The installation reminds staff that there is a person behind that heart, scan, or medical image, and staff should consider the whole person and how that person feels about their heart.”5 The collection of images represent an activity and process6 that encouraged patients and their families to express moments or elements significant to them as they navigated their condition,7 and the installation offers physicians involved in the care of young people growing up with CHD a different opportunity to reflect on a “dimension of data”6 that can be overlooked: the narrative, the story, the spinach leaf, the shining sun, the joy that dilates the heart, and the sadness that tightens it.

“What is the place of the artist in the clinic, where the aim is not art therapy as such but the elucidation of meanings that are difficult to specify, that cannot easily be put into words?”8 As artist Deborah Padfield suggests, the artist’s role in a medical context is to mediate the process and represent the landscape of illness using creative techniques that transform a concept into a tangible visual form.9 As beautifully described by Oliver Sacks, the artist can receive a reality from the medical or scientific domain, and can “give a reality back.”10Heart Narratives is an attempt to give reality back, suffused with beauty, life, voice, and authenticity, to children with CHD and their families and caretakers.

Submissions: The Arts and Medicine editors welcome proposals for features in the section. Submit yours at artsandmedicine@jamanetwork.com.
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Article Information

Corresponding Author: Giovanni Biglino, BEng, PhD, Bristol Heart Institute, Bristol Royal Infirmary, Upper Maudlin St, Bristol BS2 8HW, United Kingdom (g.biglino@bristol.ac.uk).

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.

Additional Information: Sofie Layton’s residency at Great Ormond Street Hospital for Children in London was generously supported by the Wellcome Trust, the Blavatnik Family Foundation, GOSH Arts, and the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre.

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