I know this is a website for adults with congenital heart defects, but I read something over the weekend on my Facebook feed that made me angrier than I have been in a long time—a web link to a story about a baby who was barely two pounds that had recently had balloon valvuloplasty to fix pulmonary stenosis.
I know what you’re thinking, how can this guy be mad about a little girl who had lifesaving surgery? Let me tell you, when I started reading I was really psyched to hear about how well this little girl and her incredible surgeon did. Then I read that the little girl’s cardiologist told them that she was fixed and wouldn’t have any more problems with her heart the rest of her life. At first I was shocked that this cardiologist still believes that surgery of any kind is a permanent fix for a heart condition. I think this is the worst thing a doctor can tell a CHD patient.
We know that CHD is a lifelong disease. I would think that the people my age and older are living proof, that even the most minor CHD can come back to haunt you when you’re older. As a group, we are living proof that as adults, CHD still presents us with challenges.
This little girl and her parents think that she is completely healthy. I didn’t realize that CHDs required specially trained cardiologists and ended up in heart failure at the age of 30. Luckily my cardiologist at the time recognized he was over his head and got me to the people I needed to see.
What I’m asking everyone to do is exactly what you’re doing. Keep sharing your stories and educating people about CHD—even the doctors.
Add yours below.
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