So, the book I'm writing has a male lead character that suffered a heart disease when he was a baby, he's 15 in the book, and the setting is present day California (I haven't chosen the exact location yet). I have been leaning towards him having Endocardial Cushion Defect (also known as Atrioventricular Canal Defect), but, from my research, it doesn't have the affect I want. In the book, he is adopted, but due to a screw up in the system, his heart problem, and the surgery he had to fix it when he was a baby, wasn't told to his adoptive parents. The disease, if possible, will have later complications; in the book he is supposed to suffer from them, but no one knows what it is.
Endocardial Cushion Defect leads to lung disease if untreated too long, but I'm not sure if the lung disease would still be around when the kid was 15, or would do any damage to him.
My questions are:
1.) Is it resonable that a adoption agency could screw up so bad that they missed a baby's heart surgery? Or is that too out there?
2.) Would Endocardial Cushion Defect work for the story I want to write, or would the lung disease be non-existant, or have killed him already?
3.) If ECD is plausible, would the lung disease he would have in the present be fatal, or just something minor? Would the character be hospitalized, or could some medication work?
4.) If ECD isn't plausible, what heart disease would be? Is there any heart disease out there that could match what I'm talking about?
If it's not already obvious, I'm very new to diseases. I'm certainly not a doctor, nor am I close to one, so feel free to correct me on anything you feel the need to. I'd hate to write a book with the details incorrect and end up offending someone.
I have done a lot of research, but I can't seem to find exactly what I'm looking for. Some articles are very vague, and don't specify when the lung disease could happen, or if it would just go away after the surgery. The two main websites I researched from are:
The search I've searched are "lung disease from endocardial cushion defect", "lung disease from Atrioventricular Canal defect", "complications with Atrioventricular Canal defect/endocardial cushion defect", and "heart disease for baby that needs surgery".