This blog chronicles the miracles and struggles of our daughters, Emily and Olivia. Emily was born 15 weeks early and had many complications, but she continues to amaze us! Olivia, born in China with heart complications, is also beating the odds. She joined her forever family (us!) when she was four years old and has been doing wonderfully! UPDATE: We started homeschooling August 2009 :)

Friday, May 23, 2008

Post Traumatic Stress Disorder??

Our girls bring us much joy, but with parenting there is also some heart ache. Ever since Emily was born we've struggled with issues that resulted from her early, traumatic birth. Thankfully, her health issues have subsided, but there have always been other lingering issues that keep us on our toes and keep us searching for answers. I've read up on different developmental, sensory and behavioral issues that we've encountered, but I've never really had that "a ha" moment where I could say THIS is it...until now.

Recently we were at a celebration where there balloons. Emily has always been terribly afraid of loud sudden sounds--and popping balloons ranks near the top. Needless to say, a balloon popped at this event and she was just beside herself in terror. She was inconsolable, crying hysterically and trembling as she clutched her ears for dear life. We have seen her react like this before, but this time something new occurred to me that led to our latest discovery.

The revelation began when when a concerned mom said she knew of another child who had the same fear, but that his parents had assumed it had something to do with his stay in the NICU as a preemie. She had no idea that Emily had also had an extended stay in the NICU, but it sure perked up my ears! Then, even long after I'd asked the balloon popping game to be stopped, I could not convince Emily that the balloons were not going to pop anymore. With every sound she would hunker down in terror, clutch her ears and cry, "they're popping again, Mommy, they're popping again." Balloons were not continuing to pop, but as I helplessly watched Emily, it occurred to me that she was acting just like a shell shocked soldier, bracing for the next attack--just like someone with Post Traumatic Stress Disorder! I'd never considered her "traumatized" before, but she was sure acting the part.

As soon as we got home I Googled Post Traumatic Stress Disorder and preemies. Whoa. The symptoms I found are what we've been seeing all these years! And she did have a very traumatic first year of life, including emergency bedside surgery with no time for anesthesia. We'd always hoped she didn't remember the early trauma, but everything I now read suggests otherwise.

"Trauma Through a Child's Eyes" by Peter A. Levine and Maggie Kline says, "Even when children cannot remember the actual experiences of pain, it seems to get permanently recorded at a biological level....Often, medical and surgical procedures are required and do make life possible. Amidst the relief and celebration of a saved life, it is easy to overlook the reality that these same procedures can inflict trauma that may leave emotional and behavioral effects long after the surgical wounds have healed...Those who are traumatized in the fragile period during infancy carry the burden of trauma's imprint as a lifelong struggle that seems to add a murky layer over ordinary existence...Although memory may not be consciously connected to the event, the children's play, behavior, and physical complaints reveal their struggle to deal with internal turmoil."

Emily has always been a very sweet and loving child who is eager to please, but she's also been prone to many symptoms mentioned: she can have abrupt mood swings, exaggerated emotional response, anxiety and a LOT of irrational fears. Add to that list panic attacks, clinginess, melt downs, distractibility, inattention, exaggerated startle response, extreme sensitivity to sound, freezing with immobility when stressed, hyperarousal that notices the most minute noise or motion on the other side of the room, the appearance of paying attention but spoken words often register as merely a string of words without meaning, relentless barrages of questions in an attempt to maintain a sense of safety..., etc., etc.

I ordered the book mentioned above and have been furiously reading. Just about all of the 500+ pages are highlighted and/or dog eared! As I read more and more Andy and I keep saying, "that's Emily!" It's both exciting and terrifying to make such a connection. It's exciting to have some explanations/answers and to see there is hope for healing, but also terrifying and terribly humbling to have been clueless for eight years. As parents, we've sometimes felt discouraged, not knowing how to deal with certain situations, so in that respect, this information is a gift. I only wish I'd made the connection sooner. It's not a common preemie (or adoption) topic, but maybe it should be. I've decided to share this in the hopes that it might benefit others who like me were clueless.

Here are some more highlights I've noted from the book:

There are two common but mistaken beliefs: One is that infants and young children don't feel or remember pain, and the other belief is that even if they do feel pain, there will be no long-term consequences. The reality of pain in children was only "discovered" by researchers a little over a decade ago. Doctors actually believed that newborn infants were prevented from feeling pain because of an immature nervous system. It was also thought that young children in general did not remember pain....

A U.S. News & World Report article in the year 2000 stated: Babies probably get the worst of two worlds: a mature nervous system able to feel pain coupled with an immature ability to produce neurochemicals that can inhibit pain.

Stress and trauma incurred during the period from fetus to three years old, with no correctable experience, predisposes the young child to vulnerability later in life. This is due to the likelihood of a less resilient nervous system because it is during infancy that the myelnated parasympathetic branch of the autonomic nervous system is fully developing within the context of attachment.

The brain of a traumatized child has been altered. It is tuned to "high alert" and sensitive to the tiniest trigger.

The brain of a traumatized person under threat responds in a dramatically different way compared to one that is not suffering from post-traumatic stress disorder...MRI brain scans clearly show how the electrical activity routes messages from the mygdala's early warning center directly to the "fight/flight/freeze" survival mechanism, leaving the (frontal) neocortical (thinking, planning, and reasoning) brain high and dry. Normally, with a brain that is not traumatized, when the amygdala sends warning messages to the highest centers of the brain, the neocortical ("higher") brain assesses the novelty and decides whether real danger exists. If none exists, the activity of the amygdala subsides and all is well. Unfortunately, when a child is suffering from trauma the brain behaves differently. It may register any novelty or excitement as potentially harmful. This sends a cascade of unneeded chemicals, marching like soldiers to the battleground, to fight a war that doesn't exist. It is this continuing pattern of excess energy that creates trauma's symptoms.

Once it's understood that the traumatized brain brain has a distinctly different physiology from a non-traumatized brain, it becomes clear why current anger management methods is naive to expect children riddled with traumatic imprints to stop acting out by "thinking" when triggered.

The pain of post-traumatic stress disorder was not recognized until 1980....and was perceived as a non-reversible disease to be treated with medication and talk therapy...behavior of children acting out in the pain of their unresolved trauma was seen as willful and met with punishment (something I've been guilty of) ...symptoms recognized today as hallmarks of severe shock had been completely overlooked.

Traumatized students are often mistakenly diagnosed with attention deficit disorder and treated with medication to increase attention, while their symptoms of fear and jumbled thinking remain undiscovered and/or ignored...seeing the link between trauma and learning problems clearly is the first step.

Neural pathways that form connections for learning are weaker for those who have suffered trauma but can be improved through activities that require using these pathways...


Caroline said...


You must be feeling so overwhelmed and relieved. Its good to know where those issues stem from...but does the book give ways to work through and overcome those issues?

Our love,


The Geroux Family said...

Hi Karen,
It's been a long time but your post about Emily really struck me and I imagine it was quite a relevation for you. Even though it must be difficult for you realizing your baby girl has possibly been going through this all this time, it must also be a relief somewhat to put a "name" to it. How is it going and what is the next step?
Jill G.