When I connected with Heart Heroes, after sharing a Facebook post from Alder Hey, it opened my eyes to whole new world of invaluable support, for children living with Congenital Heart Disease, that I never knew existed.
At the time of my Open-Heart Surgery, in 1973, the psychological side of living with CHD was not a priority. The physical care from the doctors and nurses was second to none, especially considering the technically poor equipment of the time, but I don’t remember being helped with the emotional side of my treatment. I have vivid memories, at the age of 7, of being left alone in my bed when I was transferred to a convalescent hospital, waiting in tears for my mum and dad to make the 60-mile round trip from home.
Apart from my cardiac challenges, my childhood was perfect, and it would take until 2019, when I was 54, for me to expose the internal damage caused by my heart treatments, trauma and the traits that I used to control 31 years of palpitations caused by my 2nd CHD, Wolff-Parkinson-White Syndrome.
In 2017, I visited the Cardiac ward at Alder Hey Hospital in Liverpool, to deliver arts and craft equipment, and I had my first glimpse of how the psychological side of cardiac treatment had improved. Play therapist nurses, pre and post-op support, single rooms, nearby family accommodation, child-friendly books helping to explain their time in hospital and shorter stays in hospital.
The support of the children while they are in hospital is invaluable, but, as the anxiety for the children and their parents is constant, I can’t overstate how important charities like Heart Heroes are in providing activities, care, advice, equipment and the opportunity to reach out to other families facing similar situations.
Living with any disability is challenging but when the illness is invisible, only those that face similar difficulties can truly relate to trauma experienced. The uplifting power of organised events that bring the children and their families together and provide opportunities to try new things, expanding their horizons in a safe and supported way.
Time spent with children is a gift that will last a lifetime and, although the rewards may not be realised immediately, I’m in no doubt, especially given my story, that the support provided by Heart Heroes will reduce the effects of the trauma felt by the children and their families and have a massively positive impact on their lives as they move into adulthood.
I’m so glad I connected with Heart Heroes so I could witness all the incredible life changing moments they create for the inspirational children in their care.
On behalf of all the children, thank you for everything you do.