We had a consult today with one of the cardiologists most likely to follow my pregnancy and then care for the baby post-operatively. She confirmed the diagnosis although she sees a slightly different variation of the anomaly than Dr. Cuneo saw. This is pretty technical stuff and has to do with where the veins and trunks are coming from. Bottom line, it affects the approach to the repair, but not the prognosis for recovery. As the fetus grows, the ultrasounds will be able to more accurately inform the doctors as to the exact location of all the parts. As Dr. Young pointed out, which fascinated me, the ultrasound is a 500% or more magnification of a heart about the size of your pinkie fingernail. Technology is amazing.
If we haven’t told you—this heart anomaly does not mean that my pregnancy is high-risk. Nor does it mean that I will necessarily have a C-section. So far, all of that looks normal and I’ll stick with my current OB unless she has a comfort-level issue.
The genetics counselor at Children’s Memorial has said that she’s not heard of the false negative with the Digeorge’s test. Phew. I have sent her the article Philippe read and am hoping she can explain it to our satisfaction and comfort level. Meanwhile, we’re still waiting for the rest of the chromosome reporting from the amnio (another 2 weeks or so), but the chromosomal anomalies most commonly associated with Truncus have been ruled out.
Meanwhile, we have a consult set with the surgeon for next Thursday, February 10. After that, our next fetal ultrasound isn’t until 3/16
And now a word from Philippe (which I’m copying from an email he sent earlier today): We had yet another great encounter with a doctor this morning – this time the doctor, Dr. Young, who will likely be our treating cardiologist moving forward. As we get more info, Ilene and I are getting to be in a better place. We’re still collecting more data: we’re planning on talking to a geneticist as soon as possible, while we have a consult with our likely pediatric cardiac surgeon lined up for next Thursday. But, in the meantime, we’re 99% certain we want Sprout to be a part of our lives. Nobody ever said it was going to be easy – we simply know it is not going to be… knowledge as a curse and as a blessing.