It's taken me a few days to figure out how to write down my visit with the cardiologist. I needed to process the information and try to step away from my inner thoughts.
I mentioned in a previous post that my Perinatologist and the Fetal Care Center of Cincinnati recommended another echo for baby B to see if the Cardiologist can find an accurate diagnosis of coarctation and/or left ventricle narrowing. I had hoped that this Dr. could pinpoint the specific needs of baby B once she is born. After quite a bit of looking, the Dr. couldn't really determine either the coarctation or the ventricle narrowing. His equipment was quite dated compared to the cutting edge stuff they had in Cincinnati.
However, he threw a bit of a bomb when he mentioned that baby B's lungs were severely underdeveloped. My Perinatologist had mentioned this in passing two days prior but I didn't focus on asking too many questions at that point. At this echo appointment, I had a chance to get a little bit more detail. My first thought was "if it's that obvious how underdeveloped the lungs are, how come no one has mentioned this until now?" But that wasn't a question for this Dr. Actually, I'm not sure why lung development falls under the heart specialist diagnosis, but at that point I just wanted some answers. When looking at baby A's lungs, I saw the significant difference. Baby A's lungs surrounded the entire chest cavity with the heart snugly inside and slightly off to the left. In comparison, baby B's heart hung completely under the lung area in plain sight, and the lungs were clearly above the heart, with the rest of the chest cavity filled with fluid. Since most of the ultrasounds have been focused on baby B, I hadn't had that type of side to side comparison in quite a while.
The Cardiologist told me that the heart issues, if any could be detected at one point, were secondary. No lungs to hold oxygen, no heart needed to pump oxygen to the lungs. He was "fascinated" (OK, this is the word choice that pissed me off and was the major reason I started to just want out of the appointment and march straight over to my Perinatologist office and scream) fascinated to see a surviving baby with so much skin edema, hydrops and such a large cystic hygroma. His prediction was that baby B would not make it to delivery. I asked him from what prior experience he based this assessment and he admitted that (wait for it, wait for it...) he's never seen anything like this and that she really shouldn't have survived this long. Congratulations Dr., you are now part of the majority here that has an opinion of fetal demise but no categorical evidence to back up your claim. That's pretty much where I decided the appointment was over. I'm not being naive here in thinking that baby B is going to come out of this healthy, and I've prepared myself that she may not make it past delivery. But I'm getting pretty tired of the fact that baby B has continued to beat expectations and yet no one is taking this into account that maybe the unexplainable has to do with them being identical twins, sharing a placenta, and having some connection whereas baby B is being helped along by baby A's absence of any issues.
Clearly this appointment was upsetting. We've been trucking along here thinking that even with a heart issue, there may be a chance of survival. Hearts can be operated on. Lungs can't. It's not clear what impact a steroid shot would have on baby B's lungs. This would be administered mainly to support baby A if I need to deliver them early, but it certainly wouldn't hurt baby B. However, with the lungs at the stage they are now, it doesn't look good.
I have a lot of questions for my weekly appointment with my Perinatologist this Wed. and hope to at least gain a little more perspective as to why this hasn't come up in conversation either here or in Cincinnati.
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