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There are more than 40 different types of congenital heart defects. There is no known cure for any o

Once Sadie’s CHD was detected, we made an appointment with a pediatric cardiologist from Lurie Children's Hospital to diagnose her specific heart defect. Like Sadie, many kids with a CHD have more than one defect. Sadie was diagnosed with Tetralogy of Fallot (TOF) during her first echocardiogram and then Pulmonary Atresia during the last echocardiogram done a week before she was born. Naturally, we wanted to know how they would fix her defects. Back then, I honestly thought that she would have one surgery, be fixed, and go on to lead a normal life. We quickly learned that this was not the case. Although we were told that TOF was on the less scary end of CHD spectrum, Sadie would still need to be put on medication as soon as she was born and have three heart surgeries; one a week after birth, another around six months, followed by a third around 12 years old. Even though this was much worse than we originally expected, we were given the impression that other than these surgeries, Sadie would lead a normal (or very close to normal) life. Words like “repair” and “fix” were used when discussing the surgeries involved. Knowing what we know now, these words were not ones that ever should have been used. Yes, doctors today can do amazing things to help children with these defects, but their hearts are never truly “fixed.” There is no cure for these defects, only band-aids that have varying degrees of success. The levels of success vary from person to person, with some responding wonderfully, and others not to the exact same procedure. Some children born with CHDs will live life with little limitation or complication, perhaps only needing to see an extra doctor once a year. Others are not so lucky. I’ll never know what kind of life Sadie would have led. I’ll never get to see her blow out candles on her birthday, or open presents on Christmas. I will never get to hear her laugh. I will never get to see her off on her first day of school, or celebrate her high school graduation. I will never get to watch my daughter grow up. This defect, that we were told by our doctors at Lurie Children's Hospital was “very manageable with great outcomes,” stole her life after only 23 days.

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