Fortune Favours the Brave: animation captures the experiences of adolescents with congenital heart disease

  • 7 November 2022

A continent-spanning, NIHR Bristol BRC-funded collaboration between scientists and artists has created Fortune Favours the Brave, an animation that captures the experiences of adolescents with congenital heart disease (CHD). Hand-drawn images were combined with a classical score to create a unique interpretation of what life with CHD is like.

The animation stemmed from a Wellcome Trust funded national project started in 2016 at Great Ormond Street Hospital co-led by bioengineer Giovanni Biglino and artist Sofie Layton, building on Layton’s Wellcome-funded residency in the hospital the year before. Giovanni, Sofie and health psychologist Jo Wray collaborated on a series of workshops involving young people with CHD, developing Layton’s arts research within the hospital. The young people were shown 3D prints of their hearts and explored imagery related to their heart through artist-led activities such as self-portraiture, body mapping and creative writing.

Giovanni and other team members used the themes and ideas that emerged during one of these workshops to write a composite first-person narrative reflecting the experiences of adolescent patients. The narrative, published in BMJ Paediatrics Open, highlighted and represented key themes and imagery important to the young people.

A chance meeting in New York between Giovanni and Tara Kamangar, a classical pianist and composer, then led the project down an unexpected path. After hearing about the project and reading the composite narrative, Tara was inspired to compose and then perform a piece of music based on sentences from the narrative. Conceived as variations on a theme, the piece revolves around the central idea that ‘my whole life is defined by my heart’, with successive sections of the score referring directly to what patients had said.

Once they had listened to Tara’s striking composition, the research team decided the piece could evolve further, incorporating visual representations of the young people’s imagery. This final stage of the creative process involved Babis Alexiadis, an animator and illustrator based in Greece who had the team had previously worked with. Babis took on the challenge of creating visuals to reflect the young people’s voices and respond to Tara’s composition. The final animation represents a creative opportunity to engender new conversations with patients, families and clinicians, while honouring the lived experience of adolescents with CHD.

This collaboration between researchers, artists and people with lived experience is a testament to how art and science can come together in organic, enriching and yet unexpected ways.

Watch Fortune Favours the Brave

True to its globetrotting origins, Giovanni and the team are now planning how to share the piece internationally. The animation will be included in the digital delegate pack at the British Congenital Cardiac Association’s annual conference in Birmingham (7-8 November). Other digital and in-person presentations are being explored and new encounters may lead to new iterations of this work.

Giovanni Biglino, bioengineer and the academic lead for the collaboration, said:

“As an academic with an interest in patient experience and as Director of The Lived Experience Network (The LENs), I am profoundly inspired by any collaboration that can lead to new ways of telling stories. Something magical happens in this collaborative space.”

Tara Kamangar, composer, said:

“I was so moved by the composite narrative of adolescents with congenital heart disease that was the impetus for this project, and sought to convey the patients’ unstinting and poetic accounts through the music. Given the multifaceted nature of the narrative, with the condition impacting patients in a myriad of ways, I thought a theme and variations could best convey the breadth of experiences brought together by a single, unifying thread.”

Sofie Layton, artist, said:

“The inspiration for my work always begins with the patients’ story and as artists and researchers we hold and give form to these narratives of illness through our collective creativity.”