Journeys
Overview - A lifelong journey
Single ventricle CHD is a lifelong journey. This map is an overview of the various stages of the journey, from pre-natal diagnosis to adulthood. Each of the stages has its separate map (below) illustrating patients’ and families’ life with a focus on their actions, challenges, and feelings. You may to start with this one.
Prenatal
Today, from 40 to 60% of all congenital heart disease is diagnosed prenatally. This map describes the emotions that follows diagnosis as well as steps that need to be taken post-diagnosis in preparation for birth. Expectant parents experience the mixed feelings of joy and apprehension while preparing to face the challenges of caring for a baby who will require intensive care.
Interstage
Interstage — the period from birth to the second operation — is the most involving and anxiety-inducing period for families. It’s been described by many families as an emotional rollercoaster, where the joy of a new baby is mixed with the worries of multiple surgeries and intensive care.
Childhood
Childhood is is a period when most patients will be relatively stable and, especially after the Fontan, many patients and families will feel normal. This is also the time when kids will become more aware of their condition, have questions, and start noticing differences with their peers.
Adolescence
Adolescence is when patients will begin taking more ownership of their condition and learn more about their health. They will start to make educational, career, and relationship decisions that take their health into consideration. Some patients may grapple with the physical limitations and emotional effects of the condition.
Adulthood
Adulthood is characterized by the same choices and life events that all adults experience, while emphasizing the need to maintain a physically healthy lifestyle and coping health concerns as they arise.
