In medical settings, people generally assume that I’m very young and that I have little personal life experience. Maybe it’s my baby face. Maybe it’s the fact that medical training is so time-consuming that often doctors don’t pursue a personal life outside of their career until they are older. Maybe it’s the fact that we devalue individual experiences, knowing that “an n of one” should not drive decisions. Or, maybe it’s the fact that our work conditions are so frequently inhumane, and the work itself is often dehumanizing (of course, those characteristics aren’t unique to medicine).
At any rate, my significant personal life has always come as a welcome surprise to patients and a bit of a curiosity to older physicians. That my personal life could include hardship and sadness — the possibility doesn’t cross anyone’s mind. I don’t intend to shock people, but my experience is shocking. Keeping quiet about the experience makes me feel sad and stifled, as though my atypical hardship were shameful, when nothing could be further from the truth. Medicine failed my child and me, not the other way around.
I’m still not sure where my story belongs. Or where I belong. So I’m having lots of conversations like the following.
Kindly Hospice Attending (initiating an educational conversation with me while he completed a death note for a patient who had just passed): “How do you diagnose death?”
Good Resident Kaitlyn: “Well, it depends on the case…
I would call in help for an unanticipated death or especially to determine when to end resuscitation. Or for brain death. But generally, if there are no heart sounds or breath sounds after listening continuously for sixty seconds, then death can be diagnosed.”
Attending: “Right, sixty seconds. I think breath sounds are more useful than heart sounds, because the heart sounds can be very faint and it’s hard to know exactly when they stop. The breath sounds usually are more distinct, and waiting sixty seconds is important because a patient may be apneic for forty-five seconds, then take a breath again, so you keep monitoring even if there are no heart sounds.”
Me: “Right, it can happen the other way though, too. Sometimes the heart is beating without any noticeable breathing.”
Attending: “Hmm, I don’t usually see that.”
Me: “When my son died, he had heart sounds for about two hours after his breaths stopped.”
Attending: (pained, staring, wordless)
Me (desperately trying to re-shape my story so it will fit into the frame of medical knowledge): “Well… maybe it’s because he was a baby. Maybe infants are different.”
Attending: “Oh my gosh. Your baby died.”
Wrapped Up In Parentheses 
this post blew me away. i think I actually whispered “whoa” outloud when I read it.
I think I”m so taken by this encounter for many reasons. the shock in her voice “oh my gosh, your baby died.” whoa. and I think I feel the same need/desire to sometimes bring my experience into the clinical setting. It’s valuable data, right? taking a step back emotionally, I have learned so much about pregnancy, life, death, and I can’t undo what I”ve learned, and so sometimes its so natural to bring it in. I agree- my baby stopped having breath sounds before heart sounds. I said to the doctor, “she’s not breathing,” the first time she came to check a heartbeat- and there was one still there. Maybe I”ve only really experienced death in the neonate setting, but I thought heart sounds usually stopped after breath sounds. Your conversation exemplifies the may times I want to bring what I’ve learned from my daughter into the exam room, but I can’t (I’d be more ok bringing it into a conversation with a colleague than a patient), because of the awkwardness that follows, my baby died.
on a totally clinical note, have you heard about this? an invention to replae the heart basically, but the pump mechanism doesnt “beat” so people can be a live without a heartbeat:
http://www.npr.org/2011/06/13/137029208/heart-with-no-beat-offers-hope-of-new-lease-on-life
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I had not heard of the pulseless heart! Wow.
I’m often more able to talk with patients about my experience, oddly (granted, I’m still not seeing prenatal patients!!). I feel like in the right situations, it can help humanize me and decrease the stigma of the patient’s own struggles, losses or illness. People so often blame themselves when something bad happens, even if they had no control over it, and that guilt just wears away – and I think sometimes, the stronger the guilt and shame, the less likely I am to even hear about it, because it’s too painful to verbalize and can manifest as illness (or addiction) instead. But if I can say, this thing happened to me and I could never have caused it or prevented it, in the right case that can be a sort of evidence that the world is random and negative events are not a punishment for moral failure (no one is safe, even doctors!)…
Whereas, with colleagues, what happened is just horrifying, especially because it was such an unexpected shock (no one is safe, even doctors?? Even vegetarians? Even people who meditate and hike and do yoga and sleep well? Even with BMI<30? Even with no DM, no anemia, normal TSH, rubella and varicella immune, GBS fing negative? Even if you wear your seatbelt low on your lap and don't eat metallic fish and don't have a cat?!? No one is safe, even doctors?)…
Which is hard, because I have LOTS of valuable knowledge about pregnancy, labor and recovery to share, but it can make people squirmy to hear those things coming out of my mouth, which makes me feel like the whole enormous experience is taboo just because Sacha got sick. It seems like you were often carrying that strange burden even while you were pregnant with Mabel. It must have taken so much grace, love and bravery to get yourself through that experience, and you have learned many valuable things that most people simply don't know and may never learn… I'm so glad that you are able to find settings to share that knowledge and wisdom (outside the patient room, if need be!).
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