Diagnosis Tweak

We went to the Fetal Cardiologist today. He did another echocardiogram to confirm the diagnosis of Tricuspid Hypoplasia with Hypoplastic Right Heart Syndrome, Pulmonary Hypoplasia, and Ventricular Spetal Defect. Sam's heart has gotten bigger as he has gotten bigger, but the tricuspid valve, right ventricle, and pulmonary artery have not. Our new diagnosis is officially Tricuspid Atresia with Hypoplastic Right Heart Syndrome, Pulmonary Atresia, and Ventricular Septal Defect. It actually doesn't change anything....either way we would be facing the same surgeries.

The doctor pretty much said he would like me to induce but is going to leave it up to me and the OB to decide. He said what he would really rather is that I deliver during the day time, not in the middle of the night when it is hard to reach specialists both here in Macon and in Atlanta. But since that is not a guarantee even if you induce, he is going to leave it up to the OB I suppose.

I did ask him about long term prognosis and outcomes of the three surgeries we will have. Long story short, Sam has about a 75% chance of surviving each of the surgeries individually, and about a 75% chance of making it to the 5 year mark after the last surgery (so that would put him at age 7-9). Outside of that age, there is really no reliable outcome measure. It sucks to start off life with such a prognosis, but I guess there are worse situations we could be in. We have no choice but to take it one day at a time.

We see the Perinatologist on Tuesday and the OB on Wednesday. Hopefully we will have a final decision on whether or not we are inducing by the end of all of that.

~Kathy