The Word(s) from a Day in Boston

Loooong day, but very interesting. Once again, we are so grateful to be living right outside of Boston and all of the experts there!

We started our day at Brigham & Women's with an ultrasound. The tech didn't say much, but a radiologist came in to finish the test and she had some wonderful things to say. It started with "I've never seen this before!" -- something we're becoming accustomed to hearing. Again, what is so odd to everyone is that there is thickening of the left ventricle with no accompanying anomaly or dysfunction of the heart. It was great to know that no dysfunction had arisen since the last echo (something they are watching for) and just great to hear once again that the heart is functioning perfectly and even that Annie's valves "are beautiful." :-) In any event, the radiologist said that she felt as if this was something that Annie's heart was overcoming or working around -- I guess in some wonderful, mysterious, biologic sense. She went so far as to say that she thought "the prognosis for this baby is very good." That was WONDERFUL to hear from someone, and such a drastic difference from two weeks ago. The other thing that the radiologist talked about was recent advances in the treatment of EFE. She has only seen EFE with an accompanying cardiac anomaly, but she said in those cases the surgeons have been able to fix the anomaly and then just go in and "clear out the EFE." Great news, but it may end up being a non-issue ... keep reading!

We went from ultrasound to the perinatologist. Dr. Dunn was terrific -- very friendly and open, especially when it came to admitting (here it comes again) that she'd never seen anything like this before. She had the reports from the ultrasound folks in front of her and still decided to hop up and go over to ultrasound to see the photos herself, telling us she had to get "a picture of this in my head." She also told us that the radiologist whom we had seen was not only one of the most experienced on staff at B&W but also one that specializes in cardiac anomalies. She relayed that the radiologist had told her that if she had seen this thickening in a fetus at 18 or 19 weeks, she may well have thought that the prognosis was very grim. However, taking into account that we're almost in the third trimester and still seeing a perfectly functioning heart, she felt more comfortable in giving a better prognosis.

Like my regular OB, Dr. Dunn wanted to talk about how the thickening may have occurred, as opposed to talking about what the condition meant specifically for Annie. She was able to tell us that most of my bloodwork from last Tuesday was back -- all negative for the antibodies for which they were testing. (It turns out one test was incorrect -- they tested me for some crazy fungus instead of the coxsackie virus they were supposed to be testing for -- so one more test is being run.) We ran through genetic things, but mostly came up with nothing suspect. We also talked about delivery, but she left that more in the hands of Dr. Levine at Children's. I think we're leaning towards delivering in Boston no matter what at this point, so I don't know why I keep asking about that. In any event, we got to see Brigham & Women's and show Jamie around a bit, and we got to meet the doctor who would at least be somewhat involved in Annie's delivery. All in all, we really didn't get a lot of information out of Dr. Dunn but it was worth going over to meet her and get established as a patient there.

On to the pediatric cardiologist at Children's .... We had another echo before we met with the doctor, then the doc came in to try and get some better images. Annie is becoming infamous for keeping a knee or elbow or her back or SOMETHING between her heart and the echo. Dr. Levine spent almost an hour trying to convince Annie to move for her and give her a good look at her heart. When she was done, she walked us through her thought process. First of all, she doesn't believe this is EFE after all! She feels like she got a good look at where the thickening is, and it's not in the endocardium. She believes it's either in the epicardium or possibly even the pericardium at this point. She ran through some other diseases that are even more rare than EFE, but really didn't feel like this presentation fit any of those either -- at least not at this point.

She spoke to us about the only other case she has seen that was anything like our case. In that case, the thickening was only in the middle of the heart (down the septum); but in Annie's case, the thickening involves the entire left ventricle. She wasn't able to draw a direct correlation between her previous case and Annie's, but she did say that it was something that gave her some reason to believe that there could be a positive outcome in Annie's case. In her previous case, the thickened part of the heart basically diminished in proportion to the growth of healthy heart tissue. By the time the baby was born, the thickened portion was only a small, thin line down the middle of the heart. The baby is clinically fine, with no heart problems whatsoever. They monitor her regularly to make sure that her heart is functioning correctly and so far, so good.

Dr. Levine says the option that has moved to the top of her list is the possibility that there was some damage to Annie's heart early on, possibly a heart attack. She thinks that what we could be seeing as thickening is the leftover damaged tissue, but that it is being surrounded by healthy heart tissue growth and even compensated for (much like the radiologist said in the morning). She cautioned us that the heart could be functioning perfectly now, but in four weeks we could see that it has begun to tire or otherwise decompensate. With the caution, though, came her statement that she was feeling "pretty good" about this and she would almost say that she thought there was a 50/50 chance that this could be nothing to worry about.

So, where are we? We're back to waiting. Dr. Levine wants me to see my OB up here weekly, just to check in and listen to Annie's heartbeat. She would rather know sooner than later if something is changing (and so would we!). We'll go back to Children's in a month for another echo with Dr. Levine. She will be looking to see if the thickening has diminished at all in relation to the rest of the heart or if any accompanying dysfunction, etc. (valve involvement, fluid buildup around the heart, etc.) has developed. There's nothing more we can do right now but wait and see.

Thank you, everyone, once again for all of the support and words of encouragement, friendship, and love. We can't thank everyone enough. Please keep us in your thoughts as we continue to wait and see. (We do have a theory that grandchild #9 on the Norwood side/grandchild #15 on the Setzler side has just figured out her own way to get some attention, even if she is the tail end of the next generation!)