Dealing with NICU Parent Survivor’s Guilt

I’ve struggled with the decision on writing about NICU survivors guilt because it always felt a little disrespectful to those that did lose a child in the NICU.  There is part of me that says, the loss of the child is the only emotion that deserves to be addressed.  But the feelings are there and I guess I need to say it out loud (in the written form) because I’ve never said it.  I have heard it once out loud, and it was really helpful to hear.  Now it’s my turn to say it, because maybe someone else needs to hear it.

The thing about the NICU that is most cruel is that there is no predicting who will go home and who will not.  The fact is the great majority do go home.  Still, way too many do not.

The only time I’ve ever had someone put the complexity of emotions that I felt around the loss of a NICU baby was the hospital chaplain when he stopped to see how Owen and I were doing the day after one of Owen’s roommates passed.  I brought up the baby’s loss and we both stared at the newly empty bed as he said, “it’s such a complex thing to deal with, being sad for their loss, for your loss…and especially one you got to know so well.  And then there is the reminder that it could have been you and the fear that it still could be you.  There is the guilt for thinking what you have going on is hard. You still have your baby.  And then there is guilt because you’re not really sure why it happened to them and not to you”

I wanted to be able to vehemently disagree.  Of course, I don’t feel all of that!  Guilt?  No, I can’t feel guilt that my son is alive.

In truth, I didn’t speak.  I didn’t have to because he said exactly what I was actively feeling and also the subconscious thoughts that I wished like hell I wasn’t thinking.  The only emotion that he missed saying was the relief that I had in someone saying so clearly what I was thinking…to kind of make it okay that I might feel guilty for their loss.

If you are reading this and you have lost a child and you’re thinking, “this is all very sick.”  I want you to know I feel that way too.   I’ve written about it a lot in my personal journal because, I wanted to understand it so I could move away from the icky feelings of guilt about this guilt.

The more I process it, I’ve come to the conclusion that guilt is the wrong word.  As I peel back the layers of feelings, what I’m starting to conclude is what I really feel is great confusion.  I think about looking around that NICU nursery and thinking, “How is it all decided?”  Who goes home and who doesn’t?  The randomness of one day a baby seems to be making great strides and the next day, they are gone.  That it seems your son is sicker, but somehow he’s still here and the other babies are not.


How is it decided??

Why do babies, children, loved children have to die?

I’m not really looking to turn this into a theological discussion.  My beliefs and your beliefs, whatever they may be, are valid and we all find our ways to cope with these questions.  But the fact is, for the most part, it seems it doesn’t matter what people’s beliefs, these questions seem to come out at some point.

I guess overtime the guilt has diminished.  I’m still confused – but at least I’m doing a better job of identifying the emotion as confusion and not guilt. For me, with time, “it’s just the way it is” is my way of beginning to hmmm…it’s not really accept….but acknowledge the reality of it maybe.  It has occurred and it is just the way it is and nothing will change it.  It still crops up but now it’s less in the form of beating myself up that my son is here and their son is not.  Now it’s more times when I stop and realize that I’m sad that there are babies missing from the picture.

We had a play date last week with NICU friends.  In a picture, we got three amazing boys who combined spent more than 22 months in the hospital and 6 years on oxygen/vent.  It was a joy to see how they are all thriving in their own ways.  As I looked I couldn’t help but also know that one of those boys had a twin sister that passed before birth and the other had two brothers who lived one and two days.  And then there was the other little boy who was in the hospital with these three and he passed away at 7.5 months.  Our picture of three…it should have been seven.

I missed them in the picture.  Those four…and many others…  I’m not sure why the three survivors are the three that survived.   It’s not really something I’m currently able to come to terms with, but I will remember each that didn’t survive and I will never stop celebrating those that did.