A Life In Review

Another year has flown by and we are once again in the middle of NICU awareness month. You know that I love to talk and teach about the NICU and what life is like for babies and families. There is a topic that I have avoided because I was still working through it myself, but this is the year that I am ready to talk to you about PTSD and the NICU.

I need to remind you, in no way a medical professional and while I will provide some resources for you if you are struggling, I am sharing my experience. Please know that you are not alone and that many have walked before you and unfortunately many will come after you. I also want to remind you that this topic is sensitive and I do get emotional in this piece. I tried to edit it multiple times, but I cannot get the emotion out. This is a part of me. This is probably one the most vulnerable posts I’ve done on this blog, so bear with me and keep an open mind.

** 6 years ago I found myself on the floor in fetal position. It didn’t make sense. My baby was home. Everything was fine. Only it wasn’t. I’m not sure what set me off that day. It could have been the Johnson and Johnson shampoo we were trying to use on our new little bundle. No that didn’t make sense, we used that one in the NICU every week. It could have been the Taylor Swift song that came on shuffle, but no, that didn’t make sense either, that’s the album you were listening to, to help take your mind off what was going on while you were in the hospital. It could have been the beep of the air conditioner that sounded like the beeping machines in the hospital, but that couldn’t be it because I know the difference between an air conditioner and medical equipment. **

It went on like that for a while for me. I thought I was going crazy. I vividly remember a moment when my mother in law had G (my daughter) in a stroller and she pushed her 5 feet ahead of me. 5 FEET. 60 inches. I almost collapsed in the middle of a mall. She was taking my baby. But… she wasn’t. She was five feet ahead of me and that’s when I knew something was really wrong. I wasn’t depressed. I knew that feeling intimately. I went to my 6 week check up and they said everything was fine, so what could it be??? That’s when I turned to my friend google.

I found a page of mothers who were talking about the after affects of traumatic births and NICU stays and for the first time since I brought G home, I felt like someone understood me. It was then, that I went to my primary care (virtually, thanks to the added layer of covid), and formally got my Post traumatic stress disorder diagnosis.

PTSD is defined in the dictionary as: “a condition of persistent mental and emotional stress occurring as a result of injury or severe psychological shock, typically involving disturbance of sleep and constant vivid recall of the experience, with dulled responses to others and to the outside world”. There is a lot of discussion over whether it’s possible to have PTSD from giving birth, or experiencing a NICU stay and to that, I’d say, find a good doctor, one who will listen and have an honest discussion.

Everyone reacts differently to trauma and that is something I think that we can all agree on. It is lonely and scary and I don’t think that our biggest problem is whether or not mothers (and fathers) are experiencing PTSD post NICU. I think that our biggest problem is the lack of knowledge and care by the very people who are treating us.

I was cleared 6 weeks after giving birth. 6 weeks after I almost lost my life. 6 weeks after major abdominal surgery. I was passed off to my primary care after filling out a one page mental health questionnaire that hardly touched on what I was feeling. It’s been six years. I don’t even remember the names of my care team, I don’t hold a grudge, but I am angry. I am angry that doctors and nurses are not equip to handle something that is so widespread in this community.

I wish that there was an easy fix for this. It’s something that I’ve thought about a lot. Should we require that all maternal health workers take a course in PTSD? Should be require NICU staff to undergo training in psychology. I don’t have a good answer here. Especially because if it weren’t for my NICU nurses I would have drowned a long time ago. I do know that we need to change something because it is alarming how any of us are just sent on our way with full blown PTSD and expected to move on and care for another living person.

That’s when I decided to start walking along side other NICU moms. So that one less mom would do this alone. I can’t change how healthcare is taught, but you know what I can do? I can teach. I can talk about this really scary topic and I can make it so that the next mom doesn’t have to turn to google to figure out what’s wrong with her. Now it’s your turn, if you are here reading this, I believe it’s meant to be.

This is NICU awareness month and part of awareness means talking about the hard stuff. Tell your friends what NICU parents are going through. If you have a NICU parent friend, check on them for real, not just days or weeks after, but months down the line because this doesn’t just stop. Read the articles, pass the information on and slowly we will make it so that healthcare has to change to fit the needs of the whole family.

Below you will find some articles and pages that will give you either research, information or just plain old support from other parents. Thank you for joining me for another NICU awareness month. I appreciate each and every one of you.

Research and Support:

• March of Dimes: Coping with Postpartum anxiety and PTSD in the NICU
• Reddit Threads of NICU Parents seeking support
• Science Direct: Australian study on NICU parents
• Texas Health Resources: Trauma may last
• American Academy Of Pediatrics: PTSD and the NICU comparisons