Background Story

Our journey began during our 20 week ultrasound, which was a routine scan to determine gender, general development of organs, and overall health of the baby.  Everything appeared to be “normal”; however, we were told that our little bundle of joy was not in a favorable position and the heart could not be fully visualized.  We were assured that this is typical and were advised to return in 3 weeks for a repeat scan. 

Feeling confident that all would be well, I showed up for my appointment, sans Stephen, fully expecting a quick scan for confirmation that everything was in perfect order.   An hour later I was told that something was amiss with the position of the heart in our baby girl’s chest and I would need to come back in 4 weeks for another look.  A few possibilities were mentioned as the cause of the positioning, including the possibility of nothing at all. 

After a very long month of worrying we returned for our repeat scan, at which time we were told that the baby appeared to have a condition called Tetralogy of Fallot but we would need to see a pediatric cardiologist for a confirmation of diagnosis.  It was also mentioned that the baby’s wrists appeared to be in a fixed position which could signify a chromosomal problem.

A week later we were worked in to see a cardiologist at Vanderbilt.  After a fetal echocardiogram Tetralogy was ruled out but a definitive diagnosis could not be established.  It was evident that the right atrium was enlarged but the reason could not be determined.  We were also told that there might be a hole in the heart (Ventricular Septal Defect, or “VSD”) but due to the poor positioning of the baby that could not be determined either (you see a theme here?).  We were advised to come back in 6 weeks for a repeat echo.  In the mean time we had an amniocentesis to check for chromosomal abnormalities, which came back negative.  The hands are still in a position that they refer to as clubbed hands and we will not know the severity or cause until birth.  It could be a birth defect that can be corrected over time or could be a chromosomal condition, or a neurological condition.  

In mid December we had a repeat fetal echo, at which point a diagnosis was finally made.  They were able to determine that our baby girl has a significant VSD and enlarged right chamber.  Due to the size of the VSD the pediatric cardiologist anticipates the necessity of open heart surgery at 3-4 months of age.  He also suspects that the enlarged chamber is due to the vessels being attached improperly (which can be addressed when the VSD is being repaired); however, confirmation will not be able to be made until birth.

We are scheduled for a c-section on January 18th at Vandy