Understanding PTSD: When the Stress of the NICU Persists

by Blaine H. Carr, Ph.D., father of preemie Ella

Blaine Carr with daughter Ella

Photo credit: Carr Family

After a busy weekend and tour of the hospital maternity wing, I was making my pregnant wife a favorite Italian dinner. She called me from another room, and when I went to see, we found her water had broken. “But our daughter is not due for another month,” I was thinking. What did this mean? My wife was terrified. I was terrified. We didn’t even have a name picked out or a bag packed. We found ourselves heading back to the hospital half-expecting and hoping to be sent home. Hours later, my daughter was born and whisked to the NICU because of breathing difficulties. We learned in the early morning that her lung had collapsed, and thus began our NICU stay.  At the time, we focused on doing the basics and surviving, but looking back on it five years later, it is much easier for us to see the long-lasting emotional effects this experience had on us and to think about how we’d support ourselves differently with what we know now.

Different Reactions to Trauma

Going through a traumatic experience of a difficult pregnancy, a loss, and/or having one or more babies in the Neonatal Intensive Care Unit can affect parents’ emotions in very different ways. No matter how short or long your baby’s stay is or what the complications are, your reaction may be mild or severe. It is completely normal to feel intense sadness, grief, guilt, shame, anger, disbelief and numbness going through this time, especially when your baby reaches milestones or suffers setbacks. In fact, your baby’s hospitalization may be one of the most stressful times you ever experience.1

It would probably then not surprise you to learn that childbirth experiences place parents at risk of developing Post-Traumatic Stress Disorder (PTSD).2 PTSD is classified as an anxiety disorder, and it is characterized by a collection of persistent, debilitating physical and emotional reactions to traumatic, scary or life-threatening experiences. To make matters more complicated, depression can co-occur with PTSD because of the powerful distress, grief and new caregiving routines that parents are thrust into in the midst of medical procedures, doctors and information overload.

When Is It PTSD?

Try this interactive screener to see if you have symptoms of PTSD. Print out your results and share with your doctor or psychologist. This PTSD screener is based upon the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV), which is used to diagnose and plan treatment for mental health.

It’s normal to have many of the symptoms of PTSD (listed below) for some time after any traumatic event. This can last for several days. Be watchful if you find you or your partner is becoming immobilized by these feelings or if they aren’t going away, particularly if they last longer than a month. Also, notice if it is interfering with your life, relationships, your ability to bond with and care for your child or your performance at work or school. Signs you should ask for help also include problems sleeping, considering the use of drugs or alcohol to cope, feeling hopeless about your life or having suicidal thoughts. Even if you’re just experiencing a few symptoms, treatment can go a long way to helping you heal and give you emotional relief. This is why it’s so important to be evaluated by a healthcare professional who can give you options for treatment.


In general there are three broad types of symptoms for PTSD:  intrusive memories, avoidance/numbing and increased anxiety/emotional arousal.

Intrusive Memories Avoidance/Numbing Anxiety/Emotional Arousal
  • Recurrent and intrusive recollections of the traumatic event, including images, thoughts or perceptions
  • Upsetting dreams about the traumatic event
  • Trying to avoid thinking or talking about the traumatic event
  • Feeling emotionally numb
  • Avoiding things that remind you of the event
  • Hopelessness about the future
  • Memory problems
  • Difficulty maintaining close relationships
  • Irritability or anger
  • Overwhelming guilt or shame
  • Self-destructive behavior, such as drinking too much
  • Trouble sleeping
  • Being easily startled or frightened

Normal for Emotions to Resurface

Different experiences, even years afterwards, can trigger distress at unexpected times. Katrina Moline, mom of a 24-weeker, writes, “I guess the thing about PTSD is it can hit you anywhere, anytime. You might be perfectly happy and just enough distracted by this, that and the other that you don’t even see it coming. That’s how it happened to me this morning. Standing in line at Starbucks I recognized a glassy-eyed look on another woman’s face. I saw in her blank stare that while she was standing right next to me smiling politely she was all together somewhere else. My mind instantly and without my control went to the days that Bryce was his sickest and I’d escape the NICU for 10 or 15 minutes to walk to the nearby Starbucks. I was never where my body was, my mind was always with Bryce.” A child’s birthday or anniversary of NICU release, a television documentary, subsequent illnesses or diagnoses (even minor)–all may bring up unexpected, intense feelings.

Self-Care

Finding a Professional

Because PTSD can develop from intense, life-threatening fear, having a child in the NICU or a loss is just as much a cause of PTSD as military combat, being a crime victim, or surviving a car accident. Mother of two preemies, Kelli Kelley shares her initial reaction to the possibility of having PTSD symptoms, “…It took some convincing in the beginning because I felt guilt for my emotions – as if I should be able to control them given my son lived. How could I be so sad and emotional knowing his successful outcome?” These emotions are a normal reaction to completely abnormal situations. Though your concern is focused on your precious child in the hospital, what you need to hear in the midst of this storm is that one of the most important ways of caring for your baby is to care for yourself.

Research has shown that these strategies can help you receive emotional support while your child is in the NICU and afterwards:3

  • Consult with a psychologist, counselor or physician about therapy and/or medications that can help with PTSD. You can ask for an initial consultation to see if you and the person you choose are a good match for working together.
  • Find peer-to-peer support4 through Hand to Hold.
  • Seek out a support group within your hospital.
  • Consider writing, journaling or blogging about your experience.

Creating a support system for yourself will go a long way toward helping you and your partner heal emotionally. And, you’ll find that taking care of your emotional health will have far-reaching benefits for coping as a parent, spouse and caregiver.

Sources:

1Miles, MS, et al. (1992). The stress response of mothers and fathers of preterm infants. Research in Nursing & Health. (15) 261-269.

2 See Ayers S and Pickering AD. (2001). Do women get posttraumatic stress disorder as a result of childbirth? A prospective study of incidence. Birth. 28(2): 111-118; Bailham D and Joseph S. (2003). Post-traumatic stress following childbirth: a review of the emerging literature and directions for future research . Psychology, Health, and Medicine. 8:159-168; and Olde E, et al. (2006). Posttraumatic stress following childbirth: a review. Clinical Psychology Review. 26(1) 1-16.

3 Shaw RJ, et al.(2009). The relationship between acute stress disorder and post traumatic stress disorder in the neonatal intensive care unitPsychosomatics. 50(2):131-7

4 Marina N, Glazebrook C. (2008). Emotional support for families of sick neonates. Paediatrics and Child Health. 18(4): 196-199.

Dr. Blaine Carr, www.drblainecarr.com, is a Licensed Psychologist in Austin, Texas in independent practice. He works with children, families and adults providing counseling, testing and consultation. Dr. Carr earned his Doctoral and Master’s degrees from the University of Texas at Austin. He completed his undergraduate degree in psychology from Trinity University in San Antonio. He and his wife live in Austin with their daughter now five, born at 35 weeks.

Comments

  1. Barbara Haller says:

    Thank you, Hand to Hold and Dr. Carr for this article. I feel like I should share it with friends and family who don’t understand why I still bring up my loss and NICU stay five years after they happened. Just pulling into the SAME hospital parking garage recently was almost more than I could handle.

  2. Thank you so much for putting together this article! It’s so important; so many parents never knew you could have PTSD from a premature birth. Our house burned down a few weeks before I went into PTL so I have a whopping plate full but I’ve been sorting it out and I’m happy to say I’m doing much better!

    I’ll share this article for sure!

Trackbacks

  1. [...] yet. The memory of seeing him hooked up to wires, parenting those weeks in the NICU.  Apparently PTSD after the NICU is a real thing, but going that far seems a betrayal of all those who left without their babies. Or [...]

  2. [...] to Hold (a preemie support organization), has an article about parents who experience post-traumatic stress disorder (PTSD) as a result of their premature birth a….  I also found a blog post from another preemie mom that really hit home with me. Wouldn’t [...]

  3. [...] In the book, Before the World Intruded, the reader is taken through a medical trauma author Michele Rosenthal survived when she was thirteen years old.  She describes feeling like a zebra, an anomaly, an isolated mystery case that no one seemed to understand or be able to cure.  She details the twenty-four years she then spent dealing with continued medical issues, all so mysterious there was no relief to be found, no matter how many specialists she met with.  She is debilitated at many points in her life and lives in a state of necessary survival and self-preservation.  In her book, Michele is open, honest, and incredibly courageous in this detailed depiction of her battle with undiagnosed Post Traumatic Stress Disorder. [...]

  4. […] “Understanding PTSD: When the Stress of the NICU Persists” at Hand to Hold (video) […]

  5. […] it turns out, NICU related post-traumatic stress is a real thing. I remember the day I read about this topic in a book about preemies the hospital […]

  6. […] Having a physical reminder of your child helps bring that baby into your personal environment. Granted, it’s nothing like finally having your baby at home! Carry a photo, a plaster cast of a hand or foot, or an app that tracks your baby’s NICU progress. It palpably connects you to your baby when your baby isn’t at home with you. The visual reminder cements the good feelings you have, and that helps you cope with the trauma of having a preemie. […]

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