We saw the pediatric cardiologist today. Leah picked me up from work and we went to the doctor’s office which is inside Bronson. Every time we go anywhere near that place it all just starts flowing back in. But when you want answers there are just some things that you have to endure. The whole way to the doctor I was dreading the conversation because I didn’t know what I would hear and I was the one that requested the appointment in the first place.
This doctor was the one that was involved in Ava’s case when it was first discovered that she could potentially have heart block. She never actually spoke to us while Ava was in the NICU. One of her nurse practitioners did. The doctor was one that I would probably would not choose for her bedside manner. She was clearly intelligent and was able speak in that academic sort of way. But very little could be said of her ability or desire to treat us like we lost our daughter. She never even asked what our daughter’s name was. She wasn’t mean she just wasn’t very delicate or compassionate. Her compassion seemed like she was doing what was taught in med school or what she studied in a textbook. I suppose it is beside the point.
A lot of the information we were told we already knew just from conversations with other doctors, but we did figure a couple of things out we did not know previously. Leah had said before, “Had they just done an echo before they took her…” That statement was shot down by the neonatologist we talked to last week. He said there was no way to diagnose a heart block without testing that is performed over time. That meant that there was no test that was available to us when we arrived at labor and delivery that would have indicated a heart block. Come to find out, this wasn’t exactly true.
As we talked with the cardiologist she said that a fetal echo would have shown a heart block. Well shit. Here we go again. Now I feel like I am ready to get mad. She went on to say that although the echo would have shown the heart block, it ultimately would have taken too much time. Given the information available at the time, no doctor in their right mind would delay Ava’s delivery for upwards of an hour to look at her heart which would have included waiting for a cardiologist, getting the echo read, etc. Most commonly, if there is no other reason to assume anything else (which there wasn’t), a fetal heart rate as low as Ava’s meant she was in distress and she needed to be delivered. Period. Even though an echo would have shown a heart block. Well Shit. Shit shit shit shit shit. Shit.
As you can imagine, this all once again goes back to the fact that had we just known something that would have suggested to look for a heart block this all could have been different. The tools were there to see a heart block it was just by chance that no one had any reason to look for one until it was too late. This really didn’t tell me anything we didn’t already know, in fact all it did was further solidify just how unlucky the entire situation was. I can’t even begin to put into words how absolutely unlucky it feels.
After that part of the conversation we also learned that even if Ava had been left in utero which would have been her best bet for survival, she still was not completely out of the woods. Had she stayed in utero she could have developed fetal hydrops which most often is fatal. But she may also have made it to term. We were given the classic medical explanation that basically meant there was no way to know what would have happened. No surprise there. It still remains true that her chances of survival would have been much higher had she not been delivered that day.
Had she made it to full term, two things could have happened as we understood it. Other than her heart block, as long as Ava was medically okay she would have been monitored for as long as possible without intervening with a pacemaker. This kind of monitoring can go no for years. The doctor told us about a three-year-old who has heart block that is monitored regularly (don’t know how frequently) to make sure she isn’t developing any symptoms. She currently lives a normal life. The intent of avoiding a pacemaker is for serious reasons. The doctor said that although the medical explanation is unknown, the earlier and more prolonged time someone is reliant on a pacemaker puts them at risk for complications much later in life. This can come in the form of congestive heart failure and/or the need for a heart transplant. Still, any of these options still would have Ava on this earth.
Lastly, although it was the first thing that I asked the doctor, she agreed that the cause of Ava’s death was her heart. Her heart could not profuse her body enough to sustain her own life. So although it was her heart that was the problem, in my mind it’s still because she was delivered and she no longer had the support of Leah’s body.
This all reaffirms what we already know and in some ways it just ticks me off even more. I still just don’t understand why this all had to happen. A simple lack of knowledge, by no one’s fault, is the reason this all unfolded the way it did. Damn.