Topics: stillbirth, statistics, pregnancy
Note: I am not a medical professional. If you have questions about your health or pregnancy, please consult a healthcare provider. While I have researched the content I am about to present, it is not medical advice. If you are worried that something is going wrong, please call your doctor or the emergency number.
“Shoot,” said my husband. “A two. My dice are against me.” He reached into his bag to get a different die, sure that this time he would roll the high number needed to defeat the monster in our game.
“My dice are against me”? I know it can feel that way, but that’s not how odds work, nor statistics. If there are 20 sides, you have an even chance of rolling any given side, *each time* you roll the die. “The dice are against me” is superstitious twaddle and changing to a different die won’t change anything (unless your dice are actually weighted, in which case, destroy them and throw away the dust! But his weren’t).
Once upon a time I naively thought (like many people) that low odds meant I was basically safe – that I would never be the one in a hundred. I would never roll that “1” that would make me lose.
Remember that a stillbirth is the death of any baby during the second half of pregnancy. The overall odds of this happening to any given pregnancy in the U.S. is about 1/160 – or, put another way, I am rolling a one-hundred-and-sixty sided die in the second half of each pregnancy, and only the “1” means the baby dies.
That number can change a bit in certain ways. The number of sides can go down (bad) or up (making it less likely that there will be issues). Many of them are not controllable, but some are.
If the mom is non-white, her die is smaller due to issues with our healthcare system (and society), so it’s more likely that she’ll roll a 1 because there are fewer other numbers on her die. If the mom has certain conditions, the die also shrinks and the chance of getting a 1 gets bigger: diabetes (especially if it’s not managed well), and certain syndromes like HELLP and pre-eclampsia, that unfortunately are often not identified until too late.
The die is generally bigger (better chances) if the mom is healthy and has routine access to good prenatal care so that any issues can be spotted early and fixed or monitored.
And the mom actually has some control over improving her chances of a living baby! This part isn’t talked about enough. But in Scotland [#8 on this list
], they’ve proven that a few simple changes can radically improve the number of babies surviving. So we need to tell pregnant mothers about the things they can do to make it the most likely that their baby will live. Go to prenatal appointments. Have worries checked right away, because it’s better to have extra appointments that turn out to be nothing than to miss an early warning that something might be going wrong. Stop smoking. Manage other health conditions like asthma, diabetes, etc. And most of all: if the baby’s kick pattern changes, AT ALL, get it checked right away – babies do not move less at the end of pregnancy. (Their movements are smaller because there’s less room, but they don’t move less often. If they’re moving less often, something is more likely *wrong*.)
Once upon a time, I didn’t even *think* about the size of my die. I knew there was a chance of miscarriage in the early months, and did worry some about that, usually when I was going to the bathroom. But generally, I thought the chances of anything bad happening after that were really low, since I was generally healthy.
Because I didn’t have any exacerbating factors, even though the statistics say a stillbirth happens on average once in every 160 pregnancies, my odds were actually better than that. My die was bigger. But the thing with rolling a die, is any of the sides could come up. And in my case, I rolled that 1.
It was a shock. For so many mothers, it is a shock. Our culture doesn’t talk enough about it. And so many of us don’t realize that we could be the one suffering what seems like a tragedy out of the dark of the past. In reality, it does happen less than it did in history, but it happens significantly more than most people would think in our highly industrialized Western society where we believe medicine can fix just about anything. If we still talked about death, like we did about a hundred and fifty years ago, we might realize that people lose babies everyday. As it is, despite not truly being rare, it is in fact more common than babies dying due to SIDS (which we are more aware of). People are simply unaware of it as a possibility unless they themselves know somebody directly who has been through it.
By finding me, you now know somebody who has been through it. And every person I tell is one more person who is aware. But that is still a very small number compared to the numbers we would need to actually make a dent in its occurrence.
My son Charlie dying was definitely a shock. In the aftermath, you struggle to comprehend how those odds apply to you. The thing is, we don’t really talk about odds in general much either. And when we do, it’s usually odds that are a little easier to understand, along the lines of a problem we can represent with pizza: if one slice has anchovies on it and you’re reaching blindly into the box, and your friend pulls out a slice that does NOT have anchovies on it, then the odds of you having a piece WITH anchovies are higher. But statistical odds like the ones were talking about with stillbirth are so macro in scope that what is actually happening is something like a friend pulling a slice of pizza out of the box, looking at it, and putting it back. The chances of you grabbing a slice with anchovies are exactly the same as the chances that he grabbed a slice with anchovies on it. And the thing with pregnancy is, every time you roll that die, or every time you grab a slice of pizza, your odds start fresh.
Then in the summer of 2019, I got pregnant. After three long years of trying, I finally got pregnant. It was what we had been waiting for. And yet I was terrified. I knew that it was possible for me to roll a 1 because I had rolled a 1 for Charlie’s birth, and now I was superstitious that I would roll it again. Everyday, a thousand times a day, every time I went to the bathroom, every time I felt funny – everything was cause for me to question the safety of my baby. In pizza terms, I had a box of pizza with no idea what flavors were inside. And last time I had pulled out anchovy, and put that piece back. And now I didn’t know whether or not I would grab the same piece, but it sure felt like the whole pizza was covered in anchovies. And nothing was safe to take.
In practical terms, what was that like? Well, it was anxiety. It came with stomach aches, intrusive images, intrusive memories, and intrusive thoughts. It came with panic attacks, and extra calls and extra visits to the doctor’s office. Frequently, I was certain that the memory I had of the time the baby kicked that morning was surely the last time I would ever feel that baby kick – even if it had just been 5 minutes ago. There were days that it was hard to love the baby, because I didn’t know whether I would get to take him home; and there were days where I loved the baby so fiercely because I knew that this could be the last time that I felt him, or sang to him, or celebrated his life.
It was exhausting.
In my case, I didn’t roll another 1, I didn’t get anchovies – I now have a healthy one-year-old. But because of my prior experience, I felt like my dice were “cursed” and throughout the pregnancy I was sure I would have to experience this baby dying too. And for some people (especially if they have a complicating factor like pre-eclampsia that shrinks their die), it can happen twice in a row. For those without complicating factors, that’s extremely rare – roughly 160 times less likely than having one in the first place. But that doesn’t mean that logic affects how you feel. It’s terrifying.
So if you know someone who is going through pregnancy after loss (PAL), I strongly advise two things: empathy and patience. They likely are having trouble controlling their anxieties, and sometimes it will get the best of them. They may understand rationally how likely it is that they will have another death, but emotions can be very overwhelming (especially when you are already dealing with rampant hormones!). I found it massively helpful, also, to have someone who could be excited for me. Don’t get me wrong, I was looking forward to the baby with all my heart, but I found it very difficult to be excited on a day-to-day basis. I was caught up in fear. I asked my friend to keep telling me that she was excited, or things she was looking forward to. It helped me be excited, to see someone else who was able to show that.
With much love, and may the odds be ever in your favor…
Charlie’s Mama Sarah