This Heart Broken

Went back into Children’s Hospital for another echo. Paul and I had spent the two weeks preparing for this appointment. Dr. Lewin did our echo and had a perinatologist from UW hospital sit in also. He discovered that she had, indeed, spontaneously changed heart rhythms (again) and no longer had the complete atrioventricular block but instead had an atrial bigeminy. This is not dangerous and she can tolerate it just fine. He said that there was only a little valve leakage but he didn’t seem too concerned and there was inconsequential amounts of fluid around her heart. At this time he doesn’t know if she’ll stay with this heart rhythm, go back to a normal heart rhythm or return to the atrioventricular block. He basically told us to take the good news while we have it and come back in two weeks and we’ll see what happens then. Apparently this is going to be a rollercoaster ride; it is very rare for a baby to switch heart rhythms like this. He had one more piece of good news….her aorta is growing well. He said that it is only 5-10% smaller than it should be which is an improvement. So now we wait……….

Went in for my OB visit. The heart rate came up as 68 beats per minute.

I received my amniocentises results showing no genetic abnormalities at all. Apparently, Zoe’s only problem is her heart.

Another echo at Children’s. Dr. Lewin discovered she had flipped into another heart rhythm issue. However, this one was called a complete atrioventricular block and is considered dangerous. This heart rhythm has no correlation between the atrial and ventricular electrical activities. Not good. He also discovered some mild valve leakage and some fluid around her heart indicating she was not tolerating this rhythm. He explained to us that Zoe could die in utero because of this heart rhythm or she could make it to delivery but after delivery she would not tolerate it. In his summary letter to us, he predicted she would only be able to live 1-2 weeks after delivery. He also let us know that she could not go into surgery with a heart rhythm like this and that we could petition the surgeons to try a pacemaker first before starting the initial surgery but that her chances of survival would be very slim; a pacemaker in a newborn is complicated and still does not produce a normal heart rhythm. He also talked to us about taking her home with us and letting nature take its course. He briefly mentioned putting her on a transplant list but cautioned us that this was a huge decision with several complications to consider. The timing of a heart coming available and then all that transplant surgery entails was not something to take lightly. He sent us home to think about our options and let us know that the chance this would go away was very small but that we’d know in a couple weeks.

I went in for another ultrasound to check her growth. The ultrasound doctor was able to identify that she had a normal heart rhythm again. Her growth was also right on scedule. I also had my amniocentesis at the same visit to determine whether there were other genetic issues going on with her.