Experience Journal: Growing up with congenital heart disease

One in 100 babies is born with some form of congenital heart defect (CHD).  Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times. The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdom” of patients and families coping with pediatric heart disease. The following excerpts were taken from conversations with patients and families during their child’s inpatient stay for a heart-related issue. Read more first-hand advice from families at the Experience Journals. Conversations with kids 19-year-old boy with congenital heart disease Strength in heart is better than strength in movement. The doctor says its weak, but I say it’s strong. Why? Because I can love. I can care. I can feel. That’s not a sign of weakness, it’s a sign of life. A sign that my disadvantage is a blessing, only to make me see that everything cannot go my way. To make me more aware of this hard but beautiful world I live in. 8-year-old girl talking to a Child Life Specialist prior to an operation My heart sounds like a washing machine because it has three holes in it. My friends say...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Experience Journal atrial septal defect congenital heart defect congenital heart disease Heart Center Source Type: news