Kerrie Kent, who was born in 1982 with congenital heart disease (CHD), recently shared a lovely Instagram post about her mum, talking about the support she has provided throughout Kerrie’s life.
Kerrie said: “My beautiful Mama 💗 with a very small me. She’s been by my side since the beginning and has now gone through four heart surgeries with me. 4! The youngest being 8 months old and the most recent in May this year. I can only imagine how scary and upsetting this must have been but I have so much admiration for her. She bought me up believing that anything is possible, that I could go anywhere and be who I wanted to be. She never let my heart disease define me and I’m so thankful for this 💛💛💛 Love you Mum x”
I got chatting to Kerrie about her post and told her about our focus on all things Friends & Family this month. She very kindly contributed a beautiful piece for this month’s zine:
There seems to be a huge CHD community on social media sites such as Instagram, full of people who post openly and supportively about the challenges of living long lives with hearts requiring ongoing medical monitoring and treatment. The group of adults currently living with CHD is the first such generation, made possible by cardiological research and the development of new and/or improved treatments. 50 years ago, the majority of babies born with CHD did not survive to their first birthday; today, 80% of those babies survive to adulthood. [Source – page 12] Adult CHD patients can be viewed as pioneers – often undergoing treatments where outcomes are as yet unknown, and navigating what it means to grow up with (and even grow old with) a heart condition. I think it’s fantastic that CHD patients are sharing their experiences so generously: raising public awareness of their conditions and treatments; forming a supportive community; demonstrating how their CHD experiences impact on their lives.
Some of the fictional texts I’ve been reading as part of my research (including those shown above) feature a teenage protagonist with CHD, but I’ve not (so far) come across an adult character with CHD, not as more than a fleeting reference, in any case. I think part of the reason for the prevalence of teenage CHD characters might be to do with the particular challenges of that time of life – forming identities and relationships; greater independence and responsibility for yourself; thinking about the future – and the impact a lifelong heart condition would have on those already formative years. However, the new frontier of CHD adulthood offers equally fascinating stories and outcomes, and I wonder whether adult CHD patients will begin to be better represented in literature as their real-life stories become ever more common and well-known? As patients like Kerrie show, there are so many interesting facets to the experience of living a lifetime with a heart condition.
Further reading: I shared this on Twitter a while back, and again recently, but, for those of you who haven’t seen it, here’s a link to a piece written by adult CHD patient Kim Edgren, who was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. Kim writes beautifully about the ongoing but changing relationships between herself, her mother, and her daughter, how they support one another through Kim’s various medical appointments and procedures.
This month the blog has had a focus on all things Friends & Family to tie in with the theme of Heart Haiku zine Issue 9. Thanks to everyone who contributed a piece of writing this month and look out for the zine, which is coming soon! Special thanks to Kerrie (and her mum) for agreeing to share their experiences…and their picture too! You can find Kerrie on Instagram, posting as @goldheartedclub .