Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, June 14, 2011

Post Traumatic Stress Disorder - NICU Parents

"Experience of a threatening situation that goes beyond the bounds of the individual coping strategies and is accompanied by a sense of helplessness and defenseless abandonment." - Yehuda, 2002

During the Congenital Diaphragmatic Hernia Summit in Philadelphia last June, one of our presentations touched on the simple fact that many parents of children who spend time in the NICU experience Post Traumatic Stress Disorder.  The extent of their PTSD depends on the person, their experiences in life, if they have had depression or any other issues prior and also sometimes the length of time.

Sometimes just discussing this with others who understand helps.  Many times, months later, friends or family are expecting you to "get over" your experience, but this isn't the case.  It is ingrained in your memory, your thoughts and is part of your child's life.  It doesn't matter if your child survived or not, it is the fact that you survived and coped. 

Here are several articles on the subject:

For Parents on NICU, Trauma May Last by Laurie Tarkin NY Times, August 24, 2009

Acute Stress Disorder Among Parents of Infants in the Neonatal Intensive Care Nursery © 2006 Academy of Psychosomatic Medicine

Parents of NICU Babies Often Experience PTSD - KSMU, Jennifer Moore, May 7, 2010

There are three groups of symtom criteria reqired to assign the diagnoses of PTSD:

  1. Recurrences - re-experiencing the trauma (for example, reoccurring nightmares, flashbacks or something that triggers the traumatic event).
  2. Avoidance - to the point of having a phobia places, people and experiences that remind the sufferer of the event or a general numbing of emotional responses.
  3. Chronic physical signs of hyper arousal, including sleep problems, irritability, anger, poor concentration, blackouts, difficulty remembering things, trouble concentrating, increased tendency and reaction to being startled, hyper vigilance (excessive watchfulness) to threat.
Parents of NICU infants have described nightmares, a smell that will take them back to a moment or even hearing something such as a computer beep that reminds them of the machines in the NICU.  These little things can and do take parents back to the NICU.  Some parents avoid the hospital their child was treated, even going out of their way in driving patterns if it is on the route they are taking.  Many times, because family and friends believe we should be "over it" they numb their emotions to the point they do not have a reaction at all, in an attempt to conform. 

We can't count how many parents after their child has been diagnosed, suffer sleeplessness, nightmares, sometimes lashing out for no reason to their partners or others.  They all have a hard time concentrating on items due to the simple fact their child's life was in flux.  To see your child hooked up to monitors and machines is traumatic.  The NICU is a war zone, where there could be death at every turn.  The lows are of the lowest lows and occasionally the highs are very high and there is no middle ground.

How do these families cope?  Sometimes by joining support groups, talking to friends who will listen and understand and occasionally seeking the help of a therapist. 

"The healthy and strong individual is the one who asks for help when he needs it. Whether he's got an abscess on his knee or in his soul." ~Rona Barrett