What We Learned From the Visit to the Perinatologist

Last week Sarah and I went to meet with a perinatologist. As I wrote last week, I was a bit nervous about the appointment and about the information that we would learn. But the appointment went about as well as could be expected and so I thought I’d just share a bit about it here.

We both liked our doctor pretty well, and it was clear from the beginning of the appointment, he was not only concerned with how Sarah was doing physically, but also how she was doing emotionally (almost a bit too concerned, but that’s okay). He spent the beginning of the appointment checking in with her and then asking us to recount the pregnancy and how things had transpired. He was helpful, attentive and asked questions as Sarah walked him through the past 5 months. We also came in with questions that we both wanted to ask and make sure got answered (as much as they could be). Before going into details, autopsy reports and other such things, he let us know the information that I think we both were really wanting to hear: he doesn’t think we should have problems with future pregnancies.

Now, of course, he had to add some caveats. If we get pregnant again, he is going to want to watch and monitor Sarah very frequently. That will mean a lot more visits to see the perinatologist, instead of her normal OB/GYN, and some possible procedures done to ensure that nothing is going to go wrong. But he seemed very hopeful that we wouldn’t experience a similar situation in the future.

At one point, he was talking to us a bit about twin pregnancies, and he said that when people find out they’re pregnant with twins, he said he sometimes has to force himself to smile. Twins surely can be a blessing, and we were excited about our impending twin boys, but he said that there are just so many more complications that come along with twins. And the type of twins we were pregnant with, di-monochorionic, are often even more susceptible to many of these complications because they share one placenta.

I won’t bore you with all of the details, but here are a few other things we talked about with the perinatologist:

• Our chances of getting pregnant with twins again is about 1/150. If we did get pregnant with twins, there would be a 30% chance of them being di-mono twins and an even smaller chance of them having the fatal complications like Micah and Judah did. I can’t do the math – but…it’s not likely. And as he mentioned a couple of times, it’s more than likely that we would get pregnant with a singleton and not twins again.
• The pathology on the placenta didn’t come back with a lot of helpful information, but there were early signs of an infection and inflammation.
• The autopsies didn’t find that it was Twin-to-twin transfusion syndrome, but it is possible that there were early signs of this. There was a 20% sign difference in Micah and Judah and Micah was significantly darker than Judah, which could have possibly meant that he was getting more blood than Judah. However, the autopsy results couldn’t be conclusive on this.
• The early problems we had with bleeding were related to a subchorionic hematoma or hemorrhage Sarah had. Our perinatologist said that these are actually quite common with pregnancies, and many times don’t cause miscarriage or any other problems. But in our case, it didn’t help.
• What the autopsy results DID find were perfectly normal little baby boys. There were no problems with any of their organs or body parts. Looking down the list of organs on the autopsy, it’s simply filled with “Normal” and “Normal for age” and “inconspicuous” and more “Normal”s.

The fact that Micah and Judah were “normal” in every way they could have been at 19 weeks 3 days is simultaneously maddening and comforting to me. I am grateful that to whatever extent they could feel pain or discomfort at that stage in their development, they didn’t (as far as we could know). They weren’t in pain – there was nothing wrong with them. However, that is also maddening because there was nothing wrong with them. They could have continued to develop and become healthy baby boys – but something else happened. Something else went wrong. Something else was not as it should have been.

The other question I asked the doctor was, “So, what do we call what happened to us?” His response was simply, “Well, what sounds right to you? What do you call it?” I primarily asked this question because I think because we lost our boys before 20 weeks (which seems to be a magical number), it’s technically called a miscarriage. But miscarriage doesn’t sound right. Perhaps it’s just my previous understanding of miscarriage being something that happens earlier, in the first trimester. Or perhaps it’s the fact that Sarah actually went through the labor process and gave birth to our two little boys. Or perhaps it’s that they were born alive – and we held them, and baptized them. Miscarriage doesn’t connect with that on any level for me.

And obviously, it isn’t considered stillbirth because they were born alive. The term the doctor suggested was that we experienced a previable preterm delivery. Preterm delivery. The boys simply weren’t developed enough to be viable – to be able to handle the world outside the womb. Previable preterm delivery. Infant loss. Those words connect more with me – but I still find it hard to find the perfect words that describe what happened to us.

So that is some of what we learned from the perinatologist. Do I still have questions? Sure. But I feel like I have a little better sense of what happened and what the future road ahead looks like. In the end, what happened to us is just really shitty bad luck. We didn’t do anything to cause this, there isn’t anything wrong with Sarah. Just really, really shitty bad luck.