Book description
This book describes with raw honesty and deep emotion the journeys that families go on when their child is born with an Imperforate Anus (IA) also known as Anorectal Malformation (ARM). It is a rare congenital condition that affects ONE in 5000 births which is very rarely talked about or…
Why read it?
1 author picked Rare and Resilient as one of their favorite books. Why do they recommend it?
This book is near and dear to me because of the topic it is based on. Anorectal malformation is a rare congenital defect that affects one in 5000 babies born. The book does a great job of bringing to light the real-life stories and experiences of patients and their families as they learn to navigate the healthcare system while aiming for the best outcome for their babies. The book gives a platform for raising awareness of birth defects such as anorectal malformations and tries to overcome the stigma associated with them. The book is a great compilation of stories of…
From Devesh's list on The best books on patient/family experience and advocacy in healthcare.
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