On a cold January afternoon in 2018, 18-year-old Sara locates me in the crowd at the train station. Together we take the bus to her home in a small village in rural Denmark. Sara tells me that she is excited to be training for her driver’s license. However, she is worried that her application for the license will be scrutinized and thereby delayed (or even rejected, I sense she fears) by the regional health inspector. In her application, she had to answer a range of health questions, including “have you had heart problems within the last two years?” Although Sara was born with a complex congenital heart defect (CHD) diagnosed at ten weeks old and treated with three heart surgeries within the first seven years of her life, she tells me that such questions are tricky to answer. While her CHD does not currently make her feel particularly “sick” nor inhibit her in, for example, driving a car, it is nevertheless a condition “for life”, she explains.
The congenital nature of her heart defect also means that Sara worries about my interview with her mother later today. She warns me that she might have misunderstood facts and stories because she does not remember the time of her diagnosis or her heart surgeries. Later, when I sit at the kitchen table with her mother, Sara chooses to sit in on most of the interview. She seems to be looking for puzzle pieces to a childhood story that started at a time she does not remember but which will inevitably shape her future, with life-long checkups and a circulatory system that her parents have described to her as “running on borrowed life”.
Through the story of Sara, I will describe what chronic living can entail when a condition is “for life”, has high stakes, yet is somewhat tricky as free access to high-quality treatment in the Danish health-care system allowed Sara to receive her diagnosis and lifesaving treatment at such a young age that her memory of these events, as well as her symptoms, have been minimized. Although CHDs are the most common type of major birth defect worldwide (van der Linde et al. 2011, 2241), this is far from a universal phenomenon, as Nancy Worthington also shows in her piece from Honduras in this series. Globally 90% of patients with CHDs live in places without access to adequate diagnostics or care (Zheleva and Atwood 2017, 16). Rather than a story of struggling to make CHD chronic, Sara’s story offers a glimpse into a life where the Danish welfare state has transformed even a very complex CHD into a chronic condition with all the possibilities and challenges that this entails.
Passport, photos, scars, and a bike – luggage for a chronic journey
The first time I meet Sara, we are in Finland at a summer camp for Scandinavian youths with CHDs in late July 2016. As we drive from the airport, portable speakers blast out pop music, mixing with laughter and talk. Sara moves to a seat across from me and asks me to explain again why I am on the trip. She is wearing shorts and a t-shirt and has long blonde curly hair tied back from her face with a scout scarf. As she emphasizes on a later occasion, had I not met her the way I did,” you would not have thought about me having a heart defect. (…) that I have something hidden under here [the t-shirt].” I explain that I am doing a PhD project on families who have children with CHDs, and I have come along to get a sense of how it is to be a teenager with this condition. She immediately begins to tell me about her CHD. Her words are so plentiful and come out so fast that she stumbles over them at times. It turns out that I did fieldwork in the outpatient clinic she goes to for checkups. With great pride and enthusiasm, Sara shows me the hjertepas [heart passport] that the nurses at the clinic have made for her. It describes her diagnosis, medication, and surgeries in Danish and English. I later learn that the passport not only helps Sara describe her condition, in case she ever needs medical help while abroad, but it also helps her understand her CHD.
When I visit her at home after the summer camp and ask her to describe her CHD, she immediately looks for her heart passport. Unfortunately, she does not find it and admits that without it, she is unsure of the exact name of her heart defect and “don’t even know how to explain what it is”. There are visual aids to help us, though. Like in most other families, Sara’s parents have made photo albums depicting the three heart surgeries she has so far undergone. As part of the interview, we open the covers with Winnie the Pooh and Tigger and go through the images one by one.
Sara describes her ambivalence towards objects like heart passports and photographs of surgeries:
“I really don’t think I remember any of it because I shouldn’t think about what I have been through. However, I know because when I look at pictures of some of the things I have been through, then I’m there. Is this really me who has been through this?”
CHDs are quite technical conditions that often require a basic understanding of the body’s circulatory system, the heart’s anatomy, and medical terms to understand a diagnosis. Sara’s comment also illustrates how at least part of the illness story is often invisible in the memories of most children and youth with CHDs since diagnosis, and the first round(s) of surgery, tend to take place in the first few years of life. For many, periods of stability ensue, some even lasting throughout the rest of their childhood. Adulthood, then, is often “when the trouble begins”, as a pediatric cardiologist once told me, given the long-term risks and complications that CHDs can entail. Sara explains that it is “weird” to have undergone such major surgeries but not remember them. It also makes it difficult to explain what she has been through. At the same time, she is happy that she does not remember anything – especially about pain.
Scars on her chest nevertheless remind her of the dramatic and sometimes risky alterations that her body has undergone. Her chest has been cut open, her chest bone sawed through, her heart stopped, and a surgeon has cut into the very organ that symbolizes life, personhood, love, and emotions. This symbolism, as well as a general lack of awareness about CHDs, sometimes causes rather dramatic reactions when Sara reveals her scars. She tells me that “the heart sounds like a dangerous place to have surgeryapparently”. So much so that people react with a sense of “‘wow, wow, wow!’ That you like could have died somehow, they feel.” Although Sara understands that “yes you are told, that if the heart doesn’t function, you cannot live”, she does not appreciate the sense of drama people often associate with the heart nor the difference, social exclusion, or overprotective attitudes that sometimes follow.Such reactions stand in stark contrast to her own experience of living with CHD, as she repeatedly tells me that she feels “rask” [healthy/recovered]. On her bedroom walls, next to a Winnie the Pooh painting with a quote saying, “remember you are always braver than you feel, stronger than you look, and smarter than you think”, she proudly displays cycling race diplomas and photographs of scout excursions. On her bookshelf is her childhood handball together with a bunch of sports medals. Despite having limited physical stamina and taking blood thinners and diuretics, Sara pushes her physical capacities to the edge, supported by her parents. She is both an avid scout and bikes on a cycling team for children with heart disease organized by The Danish Heart Foundation. Being physically active as a scout makes her feel like “a normal person”,she tells me, whereas biking on the team allows her to meet peers that “understand” her life with CHD.
However, “it is not because I have been declared rask at all,” Sara clarifies. Her complex CHD means that she needs specialized medical care and continuous checkups throughout life, a “chronic care infrastructure” (Langstrup 2013) again provided free of charge by the Danish health-care system. Yet, also in this respect, Sara’s everyday life has not been punctuated much, with checkups only occurringonce every year. “I think that when you don’t really go, then you don’t feel sick”, she tells me. However, Sara imagines that “if one day I have to go through something [e.g. a surgery] – then I just think I would feel really sick.” Imagining this scenario is not a far stretch:
“At some point, they need to replace everything, because, in theory, I am living on borrowed life, you could say. Because of how they have operated my circulatory system, it’s running on borrowed life because it can get worn out and not be able to keep up. But the doctors hope, and I do too, that it will be far out in the future. Because I really don’t want an operation, because I want to be young, I want to live my life.”
Preparing for unknown destinations
The next time I visit in the summer of 2017, Sara has photographed her beloved bike for me, as it symbolizes one of the things that make her forget her CHD.
She tells me that biking “made me aware that I was able to do more than I thought. I could manage to participate in a cycling race or two, manage to go out and bike those almost 60-70 kilometers.” As the past tense indicates, things have changed. “I have had to put away the bike for the rest of the season. I am starting to blive skidt igen [feel ill again], so…” Her voice trembles. Heart scans have so far failed to reveal the reason, so next week she is wearing a heart rhythm monitor for a few days. Her doctor wants to see whether disturbances in her heart rhythm might be causing the symptoms of excessive sweating, fatigue, and breathlessness.
Ending this story where it began, when I visit Sara at her home six months later, in January 2018, her symptoms have luckily receded. Her doctor never found a definite answer to them, so besides a slight change in medicine, she just has to attend checkups twice rather than once a year. The changes have, however, made Sara wonder about the future. Are the symptoms signals of her circulatory system’s “borrowed life” slowly running out and of inevitable surgeries moving closer? If so, Sara tells me that she is unsure precisely what needs to be done to her heart, “because there are many things [that could be wrong].” I think it depends on what they find out.” She is also payingcloser attention to “other signals in my body”. Her fingertips, as well as the tip of her toes, have started to get very cold at times. She thinks that it could be due to her “blood circulation not being stable”. Yet, she is unsure because she has always been a kold skid [a cold bastard], as she ironically phrases it when describing that these bodily sensations are in no way new to her.
Figuring out the reasons behind such symptoms is becoming increasingly crucial for Sara – not just because her condition has become unstable but also because she is transitioning to adult care. As a child, she would watch cartoons during checkups because then “you wouldn’t notice shit”. Now she is paying attention to the heart scans, as they can give insight to “what they [the doctors] have done, what it is they will do, [and] is there anything I need to pay attention to?” Or, as she previously told me, it helps her understand “what I am in for.” One such harsh reality and limitation of adulthood with a complex CHD has recently been revealed to Sara, as her doctor advised her against getting pregnant due to the high risks this would entail for her health. Although her mother has, quite pragmatically, suggested both surrogacy and adoption as alternative ways to start a family, both options seem quite surreal to Sara at the moment. Nevertheless, these are the sort of risks and limitations of chronic living with a complex CHD that she is forced to confront.
Confronting her past is a choice Sara makes on her own as she sits in on her mother’s interview. Hanne offers me, and perhaps also Sara, new glimpses of the challenges and costs that Sara’s first seven years of life had for the family. She vividly describes the struggles to figure out what was causing Sara’s fast breathing, the shock of the diagnosis, the monthlong separations of the family during hospitalizations, the first year of tube feeding, the emotional roller coaster rides related to surgeries, and the friendships lost due to lack of understanding. Hanne’s stories are definitely of a different kind than Sara’s. So, when she tells me that Sara now “pretty much functions like everyone else” although events like checkups “brings up old feelings”, I cannot help thinking that for Sara, it is almost the opposite. She has to fit every checkup, new symptom, and limitation into a (chronic) puzzle for which she has never had the starting pieces. However, Sara knows that the remaining and final pieces of this puzzle have to be hers. Before sitting in on her mother’s interview, she finished our talk contemplating whether it is time for her to manage her CHD more independently – “my parents will not live forever”. Adding a reflection uncommon for most healthy 18-year-olds, she told me that “I can also pass away before them. You never know. But I have a feeling that I will be able to live a long, very long life. I hope so”.
Marie Kofod Svensson is a postdoctoral research fellow at the Danish Heart Foundation. She is currently conducting ethnographic research on parental experiences of prenatal diagnosis of CHDs in Denmark and has previously focused on family experiences of living with such heart defects. Her latest publication, “Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living with Congenital Heart Defects”, appeared in Qualitative Health Research in 2020.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
Langstrup, Henriette. 2013. “Chronic Care Infrastructures and the Home.” Sociology of Health & Illness 35 (7): 1008–22. https://doi.org/10.1111/1467-9566.12013.
Linde, Denise van der, Elisabeth E.M. Konings, Maarten A. Slager, Maarten Witsenburg, Willem A. Helbing, Johanna J.M. Takkenberg, and Jolien W. Roos-Hesselink. 2011. “Birth Prevalence of Congenital Heart Disease Worldwide.” Journal of the American College of Cardiology 58 (21): 2241–47. https://doi.org/10.1016/j.jacc.2011.08.025.
Zheleva, Bistra, and J Brian Atwood. 2017. “The Invisible Child: Childhood Heart Disease in Global Health.” The Lancet 389 (10064): 16–18. https://doi.org/10.1016/S0140-6736(16)32185-7.
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