Amanda Rose Adams’ son Liam was diagnosed with several complex congenital heart defects (CHDs) at a second trimester ultrasound scan. His parents were faced with the choice to have a late termination or put their child through countless open-heart surgeries in order to give him a chance to survive. Heart Warriors is Amanda’s account of their journey as a heart family, from diagnosis, through Liam’s twelve surgeries to Amanda’s work in raising awareness of CHD and providing a support network to other families in similar positions.
The first half of the book is heartbreakingly raw and honest. Amanda’s account of how her world was shattered on the day she and her husband Jim found out about Liam’s heart defects and her descriptions of the agonising wait for surgery and the rollercoaster ride on the cardiac intensive care unit instantly transported me back to similar points on my own journey as a heart mum. In all honesty, I think I sobbed my way through most of the first half of the book – it so vividly described a world that was all too familiar, capturing the fear and the uncertainty of surgeries, rocky recoveries and anxiety for the future.
Later on, the book moves on to discussing living with the challenges of CHD – the fear surrounding your child’s mortality, the worries about how to help your child understand their condition and the impact on family life and siblings. Amanda shares a lot about how the heart community has helped her and how her acceptance that she is not in control of what happens in the future has also helped ease her fears. She also talks a lot about anticipatory grief – grieving the potential loss of your child before it happens. This was something I definitely resonated with although I had never recognised it as such before and it is something that I think a lot of heart parents will identify with.
Amanda’s moving account of her family’s heart journey and how she has drawn strength and comfort from the heart community is certainly one that I would recommend to other heart families to read but also one that I would recommend to the friends and families of those living with CHD to help them understand more about the journey and how they can be supportive.