The Fetal Echocardiogram

Thursday, August 28, my appointment for the fetal echo was in the afternoon so I had all day to think about it. I was relieved when the time came. I got to the office and ended up having to wait for quite awhile before being seen. This worked out okay because Kelly wasn’t able to get there at my appointment time anyway. All the while I waited I was under the impression the technician would be performing the echo. However, when I got to the exam room and the cardiologist himself came in, I was really surprised. Dr. Van Gundy is Kyler's cardiologist as well. We have known him since Kyler was about 2 months old and really like him. He is very down to earth and easy to talk to and willing to answer questions. Of course, I was disappointed Greg wasn’t there because he would have come if we knew Dr. Van Gundy would be doing the echo himself. But it was too late now.

As he performed the echo, he told me that he agreed with some of the things the perinatologist said, and disagreed with some other things. He calls himself an optimist and will give us hope where he sees it. But he will also tell you the truth and not let you believe things are great when they’re not. At the end of the echo, he told me he could see all four chambers but there were still problems. He said the biggest problem was the aortic stenosis (narrowing) and that he did still see the hole where the septum didn’t fully form between the ventricles (VSD). However, he said since we had chosen not to terminate the pregnancy, we still had 20 weeks left to see how the heart changed. He said a lot can change during that period, especially with the heart, and since he wasn’t forced to make a determination right away, he had time to monitor it. We will be doing echos every 4 weeks to see how things progress. Dr. Van Gundy said if the heart was the only concern we would be in fairly good shape, but since that is not the case, we really will need to look at everything.

I asked him about the diaphragmatic hernia and he said that is really bad because with the liver pushing on the right lung it might not develop normally. Without the right lung (it does 60% of the work) in combination with the aortic valve narrowing, he said the baby would have almost zero chance of survival. However, he said if the liver shifted down and allowed the lung to develop, there was some hope but it would mean months in NICU on machines and even after that it would be a long, hard road.

When we talked about the neurological problems, he said it was hard to tell. Originally we had been told the baby probably had Down Syndrome by Dr. Sweeney. But when we saw the perinatologist, he said it was unclear what the neurological problem was and without an amnio we really would have no way of knowing. But, Dr. Van Gundy said that based on the baby’s activity level in utero, that he didn’t feel it was Down Syndrome. He said it was more indicative of Trisomy 13 or Trisomy 18, both of which are much more devastating chromosomal disorders to have. Life expectancy is quite short and if the baby were to live, there are much more severe levels of mental retardation. Also, in talking to Dr. Van Gundy, he felt it would be beneficial to us to do the amnio just so we could be prepared for what we would see at birth and know better what to expect. He also said if we were to go the route of heroic measures and try to save his life that this would allow the right teams of surgeons and specialists to be ready and waiting at birth.

Anyway, the appointment with the cardiologist was very helpful and he took a lot of time with me. We also already had a follow-up appointment scheduled for Kyler for September 11, so Dr. Van Gundy said he would be happy to talk to us about the baby at the same time. That was great because it means that Greg can be there and he can ask questions as well. This appointment really gave me and Greg a lot to talk about and a lot to think about over the coming weekend.