Conversation with the OB

My regular OB was out of the office most of last week, so she didn't hear from the cardiologist until Friday. We finally touched base with her on Saturday morning, and spoke for almost an hour.

Neither she nor any of her partners have ever had a patient diagnosed with this. She said she was floored by the diagnosis -- that she really thought it was an issue with their equipment or something very simple. With no knowledge of the condition, she wasn't able to speak to what will happen when Annie is born. She is more focused on right now at this point. With no family link (and we have a large sampling in all of our nieces and nephews!) and knowing how rare it is, I think she is trying to figure out how this happened. There is some connection to interuterine viruses, so the first thing she wants to do is run a blood test to check for a variety of antibodies in my blood.

We also discussed my next step at length. She gave me the option of seeing a high risk OB at Dartmouth here in Manchester or seeing one in Boston. I decided it just makes more sense to go to Boston for a variety of reasons. One, it would be great to meet the people/staff who will be involved in Annie's delivery and treatment in Boston. Second, it is a rare condition but if anyone has had it anywhere in the New England area, they would have been sent to Children's in Boston as well. If any doctor is going to have experience with this condition, it is likely to be a doctor in Boston. Third, we can begin to introduce the new hospital to Jamie and begin talking to her about Annie's birth there. We have been talking to her about what we thought the experience would be here in town, but now it is going to be something altogether different.

So ... we are headed to Boston, hopefully this week or next. Dr. Johnson is arranging joint appointments for us with the high risk OB/perinatologist at Brigham & Women's and a pediatric cardiologist at Children's. She will work on getting the copy of our echo to the doctors as well, but she said to expect that they will want to take another look on their own. (That's good because we will have an opportunity to see if the condition has progressed at all.)

At this point, Dr. Johnson doesn't know more than that. She said that if the pregnancy progresses and Annie continues to tolerate the condition well, we should still expect to deliver at 39 weeks (Nov. 2). She assumes that the echoes will become more frequent as the pregnancy progresses, so if they see that Annie is worsening in any way they can make the decision to deliver her early. At this point, I will continue seeing the pediatric cardiologist here in town for echoes and continue seeing Dr. Johnson for my regular OB care. She said that may change after I visit Boston -- the high risk OB may want to take over my care completely. We'll see. I was just glad to hear that the appointments will be sooner rather than later. Waiting six weeks until the echo sounded like a long time to go without checking in on Annie! (Dr. Johnson is going to move up my ultrasound schedule as well and at least check for hydrops (fetal edema) or other secondary signs that the heart is not functioning properly.)

Meanwhile, Scott and I keep searching on-line. I found one recent report through a blog search that talks about steroid treatment and EFE. It seems to be something regarding EFE seen in mothers who have lupus (and lupus-related antibodies), but I haven't figured that part out yet. In any event, the report says that treatment with steroids reversed the condition in the fetus! We're not grasping at it, but it sounded interesting. I'll run it by someone medical as soon as I can. (Stay tuned.)

More news as soon as we hear anything ....