Thursday, February 23, 2012

Post Traumatic Stress Disorder

Post Traumatic Stress Disorder is something that is not talked about enough, in my opinion. Looking back on our own traumatic birth experience, I can see the situation was ripe for PTSD to develop. But it was never talked about.

PTSD is defined as:

A type of anxiety disorder. It can occur after you've seen or experienced a traumatic event that involved the threat of injury or death.

I remember my follow-up with the doctor that did my emergency c-section. He talked briefly about postpartum depression, but never PTSD. The NICU social worker also checked in on me a few times and asked me how I was feeling and if I was experiencing any postpartum depression. She told me the symptoms and I told her that aside from the craziness and trauma I felt from being in the NICU, that I wasn't feeling depressed in a way that I thought was out of the ordinary for someone having a baby at 23 weeks.

After leaving the NICU, I had no mental health follow-up care. I didn't really know if I needed therapy or counseling. I didn't feel depressed in the way that I thought one could feel depressed, but I was wading through some pretty heavy waters. In hindsight, I believe I was experiencing PTSD.

I remember one night, sitting in bed, reading like I normally do.  I started to have the most intense flashback of the day Jack was born.  It felt so incredibly real that I immediately sat up in bed, heart racing, sweating, and just started balling my eyes out. It was like I was back in the thick of it, feeling every single emotion that I felt it that day. Hearing the doctor say "not viable", rushing me onto the helicopter, going into emergency surgery....

This experience totally freaked me out. I got out of bed and started to try and process what I was experiencing. I knew it wasn't normal, because I had to calm myself down, remind myself that it was over, that Jack survived, that he was safe at home.

I knew something was up and I decided to do a little research. Here's what I found:

Symptoms of PTSD fall into three main categories:

1. "Reliving" the event, which disturbs day-to-day activity
  • Flashback episodes, where the event seems to be happening again and again
  • Repeated upsetting memories of the event
  • Repeated nightmares of the event
  • Strong, uncomfortable reactions to situations that remind you of the event
2. Avoidance
  • Emotional "numbing," or feeling as though you don't care about anything
  • Feeling detached
  • Being unable to remember important aspects of the trauma
  • Having a lack of interest in normal activities
  • Showing less of your moods
  • Avoiding places, people, or thoughts that remind you of the event
  • Feeling like you have no future
3. Arousal
  • Difficulty concentrating
  • Startling easily
  • Having an exaggerated response to things that startle you
  • Feeling more aware (hypervigilance)
  • Feeling irritable or having outbursts of anger
  • Having trouble falling or staying asleep
You might feel guilt about the event (including "survivor guilt"). You might also have some of the following symptoms, which are typical of anxiety, stress, and tension:
  • Agitation or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest
  • Headache

When I read the description, I just knew. I was experiencing a whole lot of these things. I did more research and it was only then that I began to hear how common it was. I started reading about other micro preemie mom's going through the same thing. Most told me that it would be bad for a time, but usually, it would get better.

I contemplated going to a therapist. I don't know why I never did. Maybe because it was during RSV season and I didn't want to leave the house. I know that played into it, but there was more. I was in a place where I really didn't want to talk much about it (avoidance and numbing!) and discussing it with my husband felt good enough. I don't believe it was the best choice on my part.

I often wonder if I would have healed much quicker if I would have taken the time to get help. I remember blogging about my emotions at the end of 2009, leaving the post saying how my one resolution for the New Year was to heal emotionally from everything that we'd been through. That healing did eventually come, but looking back, I wished I would have done things a little different.

Update! Right after I posted this, I saw this great video put together by Hand to Hold.

Pin It!


Jay, Gina, & Ruthie said...

This really hit home for much as I try not think about that night EVER, it still haunts me and I'm afraid it always will. It's so hard to talk about with others who have never been there (why I value other micro mom friendships SO VERY much) b/c they just don't truly understand just how traumatic it is to hear "We're doing everything we can but we can't guarantee she's going to make it. If she had just stayed in a few more weeks...."

Oh, how those words/memories/feelings/emotions haunt me.

Mandy Gramkow said...

Oh goodness. I only read the title, and knew it was going to be good. :) Yeah, definitely a serious issue. And I had two preemies. Did you ever read Dr.Hall's book? The depression/PTSD didn't hit me until about 6 months after Ellie was born. Until then - we were in survival mode. We were finishing up graduate school, learning how to isolate, take care of our preemie Ellie, first time parents....right. There was no time for that! I did seek counseling and it really helped...validated that some of my feelings and anxiety were "normal" (especially since the "normal" word is something we always wanted in a birth/pregnancy), and my counselor said that often time cancer patients do the same thing. They go through the treatments, all the medical stuff, and are good - fighting, surviving. But it isn't until after you are through the storm, that your emotional self comes to the forefront and you can address...what just happened? But than, it was hard this time around because the fear, anxiety of having another preemie was on the forefront. 3 years later, we have Beckett at 25 weeks, and it's ANOTHER traumatic labor and delivery...not to mention another NICU journey. The feelings came back, yet I felt like I was having to deal with it all over again...except DURING the NICU stay with Beckett. I was so thankful that both Ben and I sought counseling and I also decided to go on some medication for depression and anxiety. I didn't want to at first. I didn't have to with Ellie, why would I with Beckett? I have a great support system, a church family, family, friends, Ben's co-workers, my own personal faith...but my OB/GYN follow up appt...the doctor said something right on. He told me, "Mandy, you can have the biggest, best support system in the world, and that's great, but you are mom. No one else is mom, and no one else can feel, or take the burden like you mom." I noticed a difference. I could face the day. The week we were supposed to bring Beckett home, our house got broken into. Talk about another form of PTSD, that's it. Add that on top of all the other stress. Wow. Still don't know how we made it through. So glad that's behind us, but I'd be lying if I didn't say how much of an emotional toll that had on us...just feeling violated. And now I was supposed to bring my second preemie home, to a place where now I wasn't even sure I felt safe?

I'm still dealing...although, Beckett is home now, and I'm still in survival mode. He's eating every 2 hours, I am trying to figure out how to balance having two precious kiddos, and we're in RSV isolation.

Definitely agree this is a level of preemie parenting that NEEDS to be discussed. Very important both in the NICU to deal with feelings and emotions, but also AFTER the NICU too.

I told someone in the NICU this time around that when I have lots of money, I'm going to fund a program to get licensed counselors into NICUs. So that parents can meet with them FOR FREE, and deal with the tough stuff, the shock, the denial. I know Ben and I benefited from counseling while Beckett was in the NICU, but let me tell you, I did NOT ever want to leave the let's bring the counselors to us!!!

Ok, maybe this should have been my own post! LOL!

Walden Mommy said...

My son had a very short NICU stay but because of a variety of things that happened, I have PTSD from his birth and the aftermath.With therapy, drugs and time, things have gotten MUCH better but it is still there. I had a small reoccurence last week after running into one of his NICU nurses... she remembered me but I do not remember her.It was scary to have a flashback again.
Laura, WaldenMommy

Catarina Aleixo said...

Thank you for this Jessi. I'm not a micropreemie mum but I think you may have confirmed what I've been suspecting. This is two years on and I still have quite violent reactions to stories of other preemies and particularly of preemie deaths. I feel we came so close and somehow just can't let that go.

kmurphy said...

Thank you for writing this. I only came to terms with the fact that I have PTSD a few weeks ago. As soon as we were out of survival mode the flash backs hit hard....and they were/ are debilitating. I never knew it was something you could get from birth trauma. It was never brought up at any of my post delivery OB apts or mtgs with our nicu social worker. Since being diagnosed with it I've mentioned PTSD to a few different people and I got 1 giggle and 2 "wow that's a thing". The more awareness the better.

Kristi DeLeurere said...

I don't know for sure about other states, but I know that a psychologist can be a part of our Birth to Three team in West Virginia. So if your child qualifies for Birth to Three (which most preemies do) then you may qualify to have a psychologist come to your house to help you with whatever you are struggling with. Also, PTSD is common not only with preemie parents but also parents of other special needs children. This is a great topic, by the way!

Michelle said...

It's comforting to know that other parents feel the same way. I thought it was odd that I only recently began to really feel the effects of PTSD, but like others have said, you are in survival mode - not processing mode. I've recently begun seeing a counselor, and I think it is going to help. I want to remember how far we have come without having to endure the painful flashbacks. I also have a very strange sense of "survivor guilt" that I need to work through. Thanks for the post. My friend Katrina is in the video. She lives here in Austin and we get together for our monthly Preemie Mom's Nights. Thanks for the post.

Anonymous said...

Thank you for this important post. As a NICU social worker and a private therapist, it is important for parents of babies in the NICU to know that PTSD and other issues may arise after discharge home. It is important parents know when difficulties arise that they are not alone and there is help out there.
Thank you and keep the posts coming!
Stork Support, LLC

Anonymous said...

I do not even know with strong your blog greatly that saved me! God bless you “Opera is when a guy gets stabbed in the back and, instead of bleeding, he sings.” - Ed Gardner

Anonymous said...

Thank you for posting this I often remember those times so vividly mostly in dreams or at night. It really surfaced when I was in the OR having my second child she was perfectly healthy but I was just seeing my son there not breathing.

Hannah Barnhorn said...

I think that anyone who has had an unexpected delivery should be monitored for PTSD and not just PPD. I know now that I suffered/suffering from it. Hopefully more NICU will meet with parents and provide counseling or awareness of PTSD in addition to PPD.

Anonymous said...

Thank you for this. I re-played my first child, 28 week birth every night for two years, with out much emotion, just processed it, every night. It wasn't until I got pregnant again and I began obsessing about that pregnancy that I stopped re-playing it, once I had my second child (34 weeks, ok delivery but not normal enough as I had hope/held on to and still a NICU stay) all the emotions I didn't deal with hit me like a ton of bricks and came completely uncorked almost three years letter from my first's birth. They really need to screen for this. I can barely go into hospitals, the smell, bring it all back to this day.

Melissa Gunter said...

Hello My name is Melissa I am the proud mommy of Jeremy. He was a 25 week preemie. He is now 18 months old and for the most part has no problems. He has seasonal allergies, food allergies and reflux. Jeremy had no brain bleeds, no bowel problems, his heart closed with only the first dose of medication that they give. We did have our share of ups and downs. We went from the vent to the c-pap to the vent back to the c-pap to the Nasal INV to the c-pap and then to the nasal canula and of course back to the c-pap and finally to the nasal canula and then room air. I never thought he would breath on his own but he did. He was in the Nicu for 80 days and then to the regular nursery for 34 more days. I stayed at the Ronald McDonald house the whole time when they could have me. I am a nurse and have worked in an adult ICU so I was prepared for what I would see and what would happen. I found myself wanting to take over his care many times. I was never prepared to be the mommy of the patient though. I was strong and weak. I cryed alot but never felt depressed. I always thought that if I did it was like I was giving up and I never wanted to do that. I took pictures of everything. It wasn't a great beginning for Jeremy but it was his beginning. I want Jeremy to know that I never gave up on him. I have though started to cry and become very sad when I see anything that has to do with the NICU. I can't even watch a tv program that has anything to do with a NICU on it. I guess I am just wondering has anyone had this kind of responce at such a long time past the NICU time. I feel like I should have been feeling like this way before now. What do you all think? If anyone would like to talk contact me on facebook Melissa Gunter (Kelley)

Jessi said...

Hi Melissa!

I just wanted to respond to your question at the end of your comment - each of us is different. And the NICU affects each of us differently as well. Sometimes you are just surviving and desperately trying to be strong for so long and then, you let yourself relax ... and that is when you truly experience all those intense feelings from the NICU. I have noticed that lately (leading up to Jack's birthday) I am getting more and more emotional when I see stuff about the NICU. For me, it comes and goes.