A very nice couple we know, Paul and Clarissa, recently lost their two-week old daughter Amelie, who had a congenital heart defect:

Let me summarize that one more time – we visited our pediatrician during Congenital Heart Defect Awareness week while Amelie was displaying symptoms of a congenital heart defect and we were told nothing was wrong.

I guess we’ll never get the answers to these questions, and maybe the onus should be on the parents. Either way, my faith in doctors has taken a severe dent.

We’re continuing the research on CHDs, not only to find answers for Amelie, but to be prepared should we decide on children in the future. A one in 125 chance is a little too close for comfort. I might even forward the research on to our pediatrician. He may find the information useful and enlightening.

Questions…

Had Amelie been diagnosed earlier, it is likely she’d still be here today. All she required was a relatively routine surgery to correct the narrowing of the aorta. Shortly before she died the cardiologist explained to me that although heart surgery has risks, this kind of surgery was performed routinely without complication. Of course, this is all speculation, but the “what if…” is too much to bear at times.

Amelie would have been four weeks old today. Happy Birthday my sweet princess!!!

I don’t think there is anything I can add. I guess, I just wanted you to know. And, if possible to help. Information about the Amelie Dobek Memorial Research Fund is here. And Paul’s blog is here.