how does a baby with congenital heart disease effect the family its born in too ? how are familys effected by a baby with congenital heart disease?
Heart Diseases - 1 Answers
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I was born with congenital heart disease. It has affected my family a lot. My sister doesn't like me much because she thinks I use my heart problems to manipulate my parents. She just doesn't understand it at all. My parents went through hell when I was born and thought I wouldn't survive. Now that I'm in my twenties, we're all afraid of what my quality of life will be like in five years. If my health does turn crappy, they might have to support me because I'll be too tired to do anything at all. If they have to support me, one might have to leave their job. My parents and I have had to talk to my team of doctors about everything I want to do, to make sure I can do it without serious consequences down the road. An example of bad consequences would be last week I moved, I was hauling boxes and furniture around to help everyone who was helping me and everything was cool. Then the next day, I was too tired to sleep (yes, that is possible). The fatigue is so strong that I couldn't do anything at all except roll over in bed. Couldn't even eat. That fatigue lasted for three days. If I work too hard like that often enough, I risk developing heart failure in the near future. I risk arrhythmias and sudden death too. You can imagine how having heart failure or sudden death would affect my family. So basically, my heart problems affect my family by causing them a lot of stress and making them have to occasionally put their lives aside to help me out. I should add, that is me. The heart disease I was born with is rare and serious. Some forms of heart disease, for example small atrial septal defects, are not even detected and fix themselves before the child grows into an adult. That form of CHD wouldn't affect the family at all. It really depends on what kind it is
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