Sunday, February 17, 2013

PTSD and the Preemie Expreience

A friend, NICU mom times two posted this link on Facebook this week

The story states that parents who have experienced the NICU may suffer from PTSD like symptoms.

We. Absolutely. Do.

I remember the first time I walked back into the NICU after the boys had been released.  It had been close to a year I believe...I signed in, opened the door and then I suddenly grew shaky, I started to sweat, I was chilled, I was pale and clammy, and I started to cry.  It was like opening up the gates to a type of hell. The sounds, the sights, the smells. One of the nursed said, "that happens all the time".  If that isn't PTSD, I don't know what is.

Recently there have been several television shows that have featured premature baby story lines.  I find myself either sobbing or cursing at the unrealistic portrayal. I get a lump in my throat at commercials promoting the new and improved NICU in town.  I hold my breath and my tongue when I hear about pregnant friends. I worry until the baby reaches ~30 weeks gestation.  I breathe again after 37 weeks. I will never look at pregnancy as a happy event, and that is crazy!  But I can't stop worrying! If that isn't PTSD, I don't know what is.

My NICU friends and I have often discussed just how much the experience has affected us. We often ponder how the experience has changed our parenting styles. The way we look at our children. I see the big three potential areas things could be different if my kids were term babies.


Having to keep my babies away from people, worrying every day that they might get RSV,  and end up back in the hospital, for the first two cold and flu seasons, changed or rather exacerbated my germophobia. I think, don't quote me on this, that there is a statistic that says 4 out of 5 preemies end up back in the hospital in the first year.  That we escaped with both boys is nothing short of a miracle, or maybe it was the gallons and gallons of hand sanitizer and the hermits lifestyle we led.

I still to this day have gallons of sanitizer in the house.  I harp to wash, wash, wash.  We use sanitizer when we are out and about, double that during cold and flu season. Is that a carry over from our NICU experience? Maybe.  

Development and Education

Worrying about every single developmental milestone changed the way I look at education. I have the potential to be a Tiger Mom, I'll admit it.  My parents were Tiger-like.  I was a high achiever, my husband is a high achiever, we could want and expect that from our kids too.  But not knowing if you child would walk, or talk, or develop in any of the normal ways, changes everything.  Constantly adjusting for prematurity, changes you.

(from the March of Dimes- 

Babies who are born prematurely often have two ages:
  • Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is.
  • Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months.)
 It is only now (and not REALLY) that I am starting to believe that my kids are pretty normal in their development and that they have a shot at being pretty normal in the future.  SEVEN years later!  I would think, and correct me if I am wrong, that parents of non-preemies don't stress over every little developmental issue. Shouldn't he be holding a pencil better by now, shouldn't he be sitting up more stably now, walking? talking? Is there something wrong?????

I found that I was desperate for my kids to have an education that didn't pressure them into conforming to what a district thought was important.  I did not want to set them up for potential failure if their prematurity affected their ability to learn traditionally.

Trauma in general

This is a weird category, but I have these things, that I can only define as traumas, or worst case scenarios, morbid thoughts.

I think only a preemie parent wonders if their child is still breathing, if they should for a change (a rare, rare, change) sleep in in the morning. That's not a normal thing is it? I've always attributed that to the PTSD. The seeing my kids turn blue, purple and black because they forgot to breathe.

This might just be a twin mom thing, but I worry that one twin will die.  At first I wondered would the baby remember his twin? Now I wonder how the other will go on.  They love each other so much! I know we would be devastated, but what about the surviving twin? They are best friends, besties forever.

Do parents of non-preemies worry that their kids are going to die?  Is a preemie thing? or do I need help?

What kind of parent would I have been had my boys not been born at 26 weeks? Had they not spent five months in the hospital fighting for life? Would I be a germ loving, tiger mom, with stressed, over committed kids, achieving no matter what the cost? I wonder.

I realize all of the above sounds kind of crazy.  I know.  The experience of living in the NICU for FIVE MONTHS is something that not many people have had, if you have not lived it you cannot judge it. The trauma is something that will follow us forever. It is something that will always guide our decisions and actions, it is not something you can un-see.  I wish it was. I wish it was.

So yes, parents who have had an extensive NICU stay suffer from PTSD. I am living proof, along with all of the amazing moms and dads that were there in the trenches with us. We are living proof.