A Disconnect

This won’t happen again – yet I am terrified it will. 

As many of you know, SUDC, by definition, remains largely unexplained. We don’t have much information at all to understand what happened to Jackson. However, we have been given one piece of data that is reassuring: of the over 800 families in the SUDC registry, this has never happened more than once to any family. And almost every family either already had living children, or went on to have more children. 

I will admit, the moment I heard this I just wept tears of relief. I had combed over Google and PubMed countless times trying to search for this statistic, to no avail. And as a researcher, a “data person”, I desperately needed to understand our odds for this happening again. We have the SUDC foundation to thank for so meticulously obtaining, tracking, and documenting pretty much the only information available about SUDC. 

Although this statistic was initially reassuring, over time the relief has faded. The problem is that once you’ve been statistic (SUDC happens to 1 in 100,000 children), statistics begin to lose their reassuring power. I remember when I was pregnant we were told about certain odds for things like miscarriage, Down’s Syndrome, Trisomy 11 etc. I barely blinked because the odds for these things were so low – it couldn’t possibly happen to us.

And then it did.  

It’s a strange thing to both intellectually understand the virtual impossibility of this happening again and also feel in my bones that this will surely happen again. Because even though this is only 1 in 100,000, it also happened to 100% of our children. And I find this “dissonance” – the discrepancy between what we know (facts) and what we feel (fear) – interesting, in part because it’s actually something that I study. 

My own research is dedicated to understanding fear responses. Our lab studies often involve teaching participants to fear certain things by pairing them with something aversive, like a shock. We then remove the shock contingency, teaching participants that these things are no longer threatening. Most people will learn this easily; they are readily able to both acquire and extinguish fear. 

However, this all depends on how fear is measured. These studies often collect various measures of fear and a widely documented phenomenon is that these various measures of fear don’t always converge. In fact, many studies find that although people can easily extinguish self-reported fear, their bodies continue to physiologically respond to these stimuli as if they are still threatening. In other words, many people report being cognitively unafraid while simultaneously showing signs of physiological fear -- like sweating, increased heart rate, rushes of cortisol. They know it’s not dangerous, yet their bodies feel scared. My mentor has a great example to illustrate this: It’s like standing on the at the top of Chicago’s Skydeck, a 103 story-tall observation deck with three layers of glass floor. You know you’re safe, but try convincing yourself in your body.  

The good news is that our field knows exactly how to treat irrational fears; it’s all about exposure. The same way that you can’t cognitively talk someone out of a fear of spiders, nobody will ever be able to talk me out of my fear of this happening again. Much like the spider phobic needs to behaviorally hold a spider and learn that it’s not dangerous, I need to hold my next baby and learn that they wake up. The problem is that SUDC can strike at any age, and even if our next child wakes up 6,570 nights and makes it to their 18th birthday, something tells me I won’t exactly be “resting” then, either. The reality is that opening ourselves up to loving another child again also involves opening ourselves up to fear and the possibility of illness and pain and tragedy, of all kinds, for as long as our children live -- which we hope next time is a long, long time. 

I don’t know when or if I’ll ever shed this “baseless” fear, but I do know that we won’t let it stop us from trying again. My good friend Emily has reminded me that lightning doesn’t strike twice in the same place. We are going to have to live through several lightning storms before this can feel true. And we can’t avoid lightning storms if we want to live through them.