On November 12, 2013, I was 23 weeks pregnant. Other than our family transitioning back home after being displaced for four months due to a sewage flood (can't wait to tell you that one later), it had been a completely normal pregnancy. The news of Foster came along in June, right in the middle of what we refer to as "The Dookey Storm." Like I said, stay tuned.
On November 12, I went for a normal monthly OB appointment and the midwife could not find the baby's heartbeat. I knew her heart was beating since I could feel her move. Terrified by the look I saw on the midwife's face, I was whisked immediately into the ultrasound room. They located her heartbeat and it really sounded bad, very slow and skipping around. I panicked. The ultrasound tech that I have gotten to know through my other pregnancies drove me across the street to the hospital where I was taken immediately to labor and delivery and hooked up to the heart monitor. I heard her heart again and knew it was not good. I prayed, "Lord, let this be okay. Let this be okay." The midwife on call came in and listened. Sometime later I will tell you the story of the midwife on call that day - she is the first example of how the Lord has provided for us beyond measure during this journey. Again, stay tuned. It's a really good story.
Within a half hour I was on an ambulance to Duke University Medical Center, which is an hour away. Drew was following behind. In the ambulance I had no idea what was going on with her heart. I knew it wasn't good. But there was a certain peace about it. When we arrived at Duke, I was given a room. I guess we're gonna be here a while? The the anesthesiologist came in to talk about anesthesia options with delivery, whether I had any adverse issues with anesthesia, etc. What is she talking about? Why is she here? This baby is 23 weeks old. She can't be delivered. Then I was taken to pediatric cardiology where a fetal echocardiogram was done to determine what was wrong with her heart. The test took about thirty minutes. Drew and I watched "Let's Make Deal". I was so afraid of what they were about to tell us.
Dr. Miller was the first cardiologist we saw, the one that delivered the news. The way he looked at us scared me. It was sympathetic. You never want a doctor to look at you sympathetically. The diagnosis was congenital third-degree (complete) heart block. The heart has four chambers. The upper two chambers are the atria. The two lower chambers are the ventricles. The ventricles are the primary pumping chambers that send the blood through the body. When complete CHB occurs, the electrical signal does not make it from the top chambers to the bottom. As a result, the bottom of of the heart establishes its own, very slow, heart rate. Foster's ventricular rate was 50 to 55 beats per minute. A normal fetal heart rate is 120 to 160 beats per minute. The good news was that her heart was structurally well put together.
Dr. Miller told us that there was no way to predict what would happen. "Some babies can tolerate this. Some cannot." There was no way to know what group we would be in. He explained that her heart rate was "on the low end of the threshold" and he would be "much more optimistic" if it were in the 60's. I will never forget those words, "much more optimistic." The lawyer in me concluded that, by the use of that language, he had indicated that he was not optimistic. He told us that our only option was to wait and see whether her heart rate could sustain her. But there was light at the end of the tunnel. Help is on the way! He explained that she would get a pacemaker at birth. But the heart must sustain her long enough to grow large enough to be born and have the surgery. My initial reaction was panic. A newborn. My baby. With a pacemaker? Heart surgery. How long can you live with a pacemaker? What if it stops working? What if it breaks? What if its defective? Can she play sports? Can she go to school? Well, how long? How big does she have to be for the pacemaker? He explained that 32 weeks was sort of the threshold. They could do something at 32 weeks, although it would be a very delicate situation. He explained that the prognosis was good at 36 weeks. If she were born at term, she could get a permanent pacemaker. Our goal was 32 weeks. Actually, our goal was 24 weeks. One week at a time. Each week a gift. (As I write this, we are 32 1/2 weeks.)
So, we went back to our room. And prayed. And prayed some more. Later that evening we met another cardiologist, who is known in our family as McDreamy because, well, he sort of is. And a really, really good doctor. He came into our room to explain what all this means. He had the same opinion as Dr. Miller that there was nothing they could predict and we would have to wait and see if the heart would hold out. McDreamy explained that she likely would live a normal life with a pacemaker and that children with this condition typically do very well with pacemakers. She could do everything except play contact sports. Okay. Things are looking better. The battle would be getting her here at term and big enough for the pacemaker.
CHB is uncommon and occurs in 1 in 10,0000 to 20,000 babies. McDreamy asked me if I had Lupus. No. Why does everyone keep asking me that? He explained this condition is almost always caused by Lupus or Sjogren's Syndrome in the mother. People with these autoimmune disorders have what they call anti-Ro and anti-La antibodies, which act out to cause the symptoms of the disease. On occasion those antibodies cross the placenta and attack the electrical system of the baby's heart. They did the tests and determined that I had the antibodies. My understanding is that its some type of asymptomatic autoimmune disorder, most likely Lupus or Sjogren's, that may or may not become symptomatic. This will be addressed later by a rheumatologist. I'm not going to lie in wait for the symptoms of a disease that may never happen. So there. Enough of that.
After McDreamy explained the stuff about the pacemaker, I looked at Drew and the only thing I could think of to say was, "She's going to be so badass with her pacemaker." So far, she has proven herself to be the very definition of that term. McDreamy left and we sat there. And prayed some more. We prayed for her heart. Mostly we prayed for peace. It is an understatement to say that it has been given.
So, we stayed at Duke for two nights so they could get a full picture of what was going on. The plan was to come to Duke every week to check the status of the heart. The concern was that it would start to show signs of distress. If that happens and the heart starts to fail, the heart and the body start to accumulate fluid and that's how they know things aren't going well. We have been updating friends and family through emails after every trip to Duke, but started this blog as a more convenient format as her birthday approaches. Above I have included those emails as sort of a record. I hope someone who is going through this might find some encouragement. Because the condition is uncommon, its hard to find people with similar stories.
Much love,
Anna and Drew
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