Answering some questions

First what exact kind of congenital heart defect you have, what the surgeons did to correct it, and your future prognosis.

Well you don't have a diagnosis that fits into any one CHD syndrome like Tetralogy of Fallot or Hypoplastic left heart syndrome. Instead you have a few different defects that add up to your serious, but they think, correctable condition.

You have -

A ventricular septal defect (VSD), also called a hole in the heart, an Interrupted aortic arch type B, pulmonary valve stenosis, a thick and malformed mitrial, and (as the Dr discovered yesterday) a malformed aortic valve, and patent ductus arteriosis (which the Dr kept open to keep you alive).



Your surgery was closure of ventricular septal defect, repair of interrupted aortic arch, ligation of patent ductus arteriosis.

When we discussed your case with Dr Sterns fellow Dr Kane we were told -


That because your aortic arch was on the small side they would have to open you up and make the decision as to what they would be able to do/fix.


Version 1 was that because your aorta was small they would have to make your heart a one ventricle chamber heart which would create a heart that would work for you but that it would mean a shortened life span, and most likely additional surgeries in the future.

or if possible they would make you a two ventricle chamber heart and that would mean a normal life span and, hopefully, no further surgeries in the future.

Ultimately they would not know what they would be able to do till they opened you up and saw your actual structure.


The report we got from the surgeon after your surgery was done was that they were able to create a two chamber heart for you (YAY!) and that we have every reason to expect a normal life span for you but that they discovered that not only was your mitrial valve malformed (which we knew) but that your aortic valve was also malformed. They are both working well, with no leaks, but that there is a chance that they may fail sometime in the future. So maybe when your 15, or 30, or..... you may need an additional surgery to fix your valves but then you may not. All in all it is a better than expected outcome and your Dad and I are so thrilled and grateful to the surgeons for their work.

I could barely form a complete thought yesterday let alone post here on the blog but your Dad and I did take pictures, and video. We sang to you, and touched every part we could reach. I made sure to kiss every inch of you I could reach and I even got to help with your prep-bath that the nurse David gave you the night before.


Here's a few pictures from the day...