One of the things I hear most often when I share any part of Adrian’s story is that stillbirth is “rare”. And I understand this. If I had heard that something happened in less than 1% of all cases, I might have considered it rare, too…Until it happened to me.
I think the problem with using words like “rare” in place of actual numbers is that it’s a description that renders those numbers abstract. Our brains are so unused to thinking about statistical concepts that we classify these things as either likely, e.g. I’m likely to have a flat tire at some point in my life; or practically impossible, e.g. I will never win the lottery. But we do a really poor job of thinking about all of the possibilities that lie in between.
If I told you that something happened 1 out of 160 times, would you consider that rare? What if I put it in context? What if, for example, every time you crossed the street, you were subject to a 1 in 160 chance of being hit by a bus? Or in more positive terms, let’s argue that one in 160 lottery scratchers yields $100 (These things are obviously not true, this is just a “for instance”). Do these numbers start to have more meaning now? Do you find yourself giving them different labels? If you heard that someone was hit by a bus while crossing the street, would you now think of it as something tragic, and also less surprising? And if the person who was hit by a bus was your friend or loved one, would you maybe start advocating for safeguards and education in order to keep similar tragedies from happening again?
This is one of the things that frustrates me when I talk about stillbirth outside of the baby loss community. Because the statistics are very real, and yet they are commonly dismissed. People use words like “rare” to distance themselves or to quiet a pregnant mother’s concerns, implying that stillbirth is something that never happens, or if it does, it’s more like one in a million.
I understand a lot of this is prompted by fear. Pregnancy is a scary time, and it feels like so much is outside of our control. I think there is also this unconscious assumption that stillbirth just happens, and that there is nothing we can do. (This is wrong.) And even if it weren’t, this kind of attitude would only keeps us from developing better prevention and solutions.
Simple fact: in the United States today, 1 out of 160 pregnancies ends in the death of the child at or after 20 weeks gestation. 1 in 160. If we were talking about something meaningless, I could maybe understand the use of words like “rare”. But this isn’t meaningless. This is important. This is a sad, and in many cases, preventable, emergency.
So please use caution when thinking about statistics. 1% is quite a lot when you’re talking about the death of a child. You may consider it “rare,” but it’s really a matter of perspective. And from where I’m sitting, 1 in 160 is one too many.
This title was originally used for an earlier blog post: Stillbirth & Statistics (Old Version)