Understanding Complex PTSD Trauma

By: Charlie P. Gilbert II, LCSW

“The” Inhibitor Traumas - Do you remember yours? That first time that it really hit you that your child had a life-threatening inhibitor.

Maybe it was when the Doctor or Nurse told you in the HTC clinic that the “normal” treatments to stop the bleeding weren’t working and that it was clear that your child’s body was rejecting the known factor solutions. Or it could have been when you nervously waited in the chaotic Emergency Room with dozens of other parents while a Doctor somewhere behind a curtain in another room tried to figure out what to do with your child who couldn’t stop bleeding, swelling and crying. And then there was the time that you with others had to hold down your child, kicking and screaming, to infuse or draw labs. The abject powerlessness of a parent to protect or save their child is painful in itself. You probably recall the de-personalization that you felt when it seemed as though you were outside of your own body, observing and suspending reality. Take a moment and think about that time. You’ll know which incident it was because it’s written indelibly on your memory. Or maybe you have several such events to choose from.

There’s nothing that prepares you for this. Yes, Uncle Billy and Pops both had hemophilia and an inhibitor, but that was their life and your child’s future is now threatened. You knew that this wouldn’t be easy, despite everyone telling you that all the new modern treatments would prevent the joint damage and crippling changes that Dad had and your child would be “normal” like the other kids at school. But this, this is horrible! Few people would doubt that these experiences constitute a traumatic exposure.

The memories are back there and perhaps you’ve managed to erase them from the daily journal of your thoughts and behaviors but in the darkest recesses of your mind they are hiding. The events have left little land mines for that unsuspecting moment when they trigger the anger, panic, powerlessness, fear or hurt that comes from your exposures to the earlier threat to your child’s existence and your impotent role as a parent. It might be on another visit to the hospital years later when someone minimizes the effects of a bleed. Or it could be when the school assumed that your child couldn’t participate in the class musical or other event.

The Brain’s Response

So what will it take to recognize the lasting effect these events have had on your mind? We know that the most traumatic events and stressors lead to a cascade of neuroendocrine responses in the body. These changes alert and prepare us to take on the stresses and challenges we’re facing. But, if constantly repeated, they also lead to permanent changes in our brain structure in which we develop high arousal levels leading to anxiety, fear, hypervigilance, avoidance, and compulsive, intrusive thoughts and memories. Some clinicians will find these symptoms giving rise to a diagnosis of depression or PTSD. In Depression they observe a loss of hope and the inability to find enjoyment. Acute Inhibitor care at a very young age can also result in traumatic exposures which isolate family members, change their roles and may produce an anxious attachment style in the child, leading to future difficulty forming interpersonal relationships.

In the case of PTSD, clinicians look for a traumatic event. Here however, we find in inhibitor care and treatment a series of small and repetitive traumas that over time coalesce into an ongoing chronic stressor leading to physical, developmental and interpersonal negative outcomes. These include avoidance of medical care and treatment or withdrawal or hypersensitivity to other threats in the environment.

We know, from the research of the ACEs (Adverse Childhood Experiences) events in children’s lives, that abuse, neglect and other severe trauma, experienced or witnessed predicts very negative outcomes later in adult life. In this study of the early lives of more than 17,000 adults, the CDC and Kaiser Permanente Health Appraisal Clinic found that ten forms of childhood trauma were associated with negative psychological and physical outcomes. Unfortunately, the forms of trauma most studied failed to capture the inevitable and repeated traumatization of children and their families by medical and surgical procedures. In response to this oversight, professional bodies have begun to look at new terminology to describe this problem. Complex trauma and Complex PTSD are two of the newer terms created to recognize the various symptoms of this developmental trauma.

The changes that occur in the brain following these occurrences become permanent and represent considerable risk to health and life for parents and children going forward. Parenting also affects children’s’ brain development in lasting ways. As children grow with the ever-present threat of severe physical outcomes of a momentary lapse in judgement, they take their cues from the coping practices of their parents. In effect, they surrender their own coping choices to the dominant style of their parents’ management of the stressors that develop out of the child’s inhibitor.

This is also quite evident in our other children, the siblings of the affected child, when they witness the overpowering acuity of inhibitor related activity. Priorities shift, plans are given up, goals are set aside, events cancelled, hours are spent in clinical offices or emergency rooms. Needed attention shifts from the unaffected siblings to your child with the inhibitor. The brothers and sisters get to see their significant adults at their most stressed and find in that experience meaning about their own role in the family. At the same time the older and younger sibs are required to take on adult responsibilities and more mature coping responses. Their childhood can fade away into a “parentified” identity with accompanying expectations from other family members. The siblings help with the caregiving, sacrifice their own events and happiness, and can become surrogate adults in the home. Of course, it’s quite possible that they will reject the role entirely and become the focus of resistance to the family process. Their acting out can send a powerful message about their complaints. The stressors experienced by siblings, while lacking a diagnostic terminology, lead to many of the same symptoms and developmental impediments found in PTSD. More than a few siblings of children with inhibitors have shared that in crisis they become “invisible.” Some even hide there.

Overcoming the Trauma

So what, if anything can we do about this? How can we help our traumatized children, siblings, partners, and ourselves to avoid the negative outcomes of the repeated traumatizing exposures? There are certainly a great many approaches to reduce, mitigate and overcome the symptoms and risks of the trauma. In the summer issue of Lifelines for Health Dr. Gary McClain told us about the effects of repeated traumatic exposures on the individual with an inhibitor and on his caregivers as well. He encouraged us to improve our coping, manage our anxiety, remain calm and get support.

I’d like to add several important ideas that could help us to address the symptoms and improve outcomes for our affected children, siblings, partners and for ourselves. The following approaches are designed to be useful for anyone experiencing the effects of repeated and chronic traumatic exposures and needing to overcome adversity. Some of these you may find are helpful while others don’t make sense to you at this time. Some of you may have tried and found them not helpful. Others you might see as difficult or moving you out of your normal responses. I would ask you not to discard them as they may be more effective at another time or with another member of the family. Here are “Charlie’s Challenges.”

First let’s remember the lesson of why we have families. A family is the laboratory for the biopsychosocial development of its members. Each person in our family is on a trajectory of development towards happiness, satisfaction, cognitive/ intellectual development, interpersonal effectiveness and meaning in life. We can get there and help our family members to get there by understanding and supporting each other. There are some rules for accomplishing this. One is that we need to understand the meaning of events, emotions, and behavior not just in ourselves and family members but in others around us. This requires us to set aside our emotions for a moment and consider the significance of what is happening, what we and our family members are feeling. The poet, Maya Angelou told us that people don’t really remember what we said or did but “…how we made them feel.” If we lose our “cool,” we become reactive and not reflective. Aside from saying things that serve to alienate others, we set a problematic example for our children and impede their acceptance and appropriate response to the stressors.

Our children are smart and they often know exactly how we’re feeling even if we didn’t verbalize it directly. But they more frequently act out their feelings rather than articulate them. We must help them to find the words and sometimes we give them the words by recognizing and validating their feelings. They often need help to really see and understand what is going on around them, especially in threatening environments such as schools, emergency rooms and clinics. To understand their risk, they will take their cue from their parents and other adults behavior. If they’ve got an angry, upset or fearful parent they will adapt quickly to fight, flight or freeze. Their arousal level will peak with uncertainty about what to do next. In that setting they may mistake or over exaggerate the threat that exists and they won’t be able to see any positive benefits of treatment and compliance. They won’t recognize or adopt the process of reflection and choosing the best approach. So, we must protect them from our negative emotions and model the self-regulation that will instill confidence and serve them well in this and future crises.

But reflection serves us as well. An important aspect of coping with stress is recognizing and accepting events and their meaning to us. As we learn to identify our triggers we can adopt an improved “reflective functioning,” that simultaneously engages our emotional and cognitive brain structures. Rather than respond immediately to each insult and stressor that appears in our environment we need to step back and ask ourselves, “What is this?” and “Do I own this?” This will help us to modify our perception of the problem and reduce its power. If we can adopt this approach we can avoid the outlay of emotional energy on the past and move on to a more productive approach of understanding and coping with the stressors. These changes can re-train the brain to be less responsive to triggers and reduce our need to be overly vigilant.

Some parents have pursued other behavioral and cognitive approaches that have proven helpful in defusing their emotional outbursts. Quite a few people have discovered that they need a “time out” in response to re-experiencing the thoughts and emotions from the original trauma. They are inclined to focus on a breathing exercise to clear their mind and control their physiological response. Others may go directly to meditation and find that doing so routinely, before entering a stressful venue, helps to reduce their anxiety.

The old cliché of “living in the moment” rather than the “painful past” gives us a chance to think clearly and positively. Sometimes we’ll find that we “own” only a part of the stressor and that a painful part belongs to some other person or is part of a different problem. Yes, we certainly learn from the past, but if our negative emotions focus only on the past, they cloud our vision of what will makea significant change in coping with the issue. At other times we may find that we need to take responsibility for our actions and emotions and this requires making amends to our loved ones. The act of offering apology and asking for forgiveness can lift a burden from ourselves and from our partners and children.

Moving towards a more effective outcome, we know that decision-making is improved by positive thinking. Problem-solving is enhanced and positive affect reduces psychological distress and alters neuroendocrine, inflammatory, and cardiovascular activity. It leads to experiencing less pain and improved social relations. Other research points to positive affect reducing the likelihood of adolescent substance abuse and risky behaviors. Helping our loved ones to find the positive in a difficult situation can make a big difference in their feeling of security and hope for a better future.

Another critical aspect of ownership is that as parents, we can’t take ownership of health problems and behavior from our children.

If we want our children to learn to manage their lives and become resilient they have to “own” their life with all of its assets and liabilities.

It can be awfully hard for parents to not take complete responsibility for our children’s health and treatment issues but doing so takes away the motivation to be effective managers of their own lives. It deprives them of the feelings of competence and confidence in directing their own position in the family and in the world in general. Yes, we love and want to spare them all the mistakes in judgement, but they find out who they are by participating in the process. As Billy Joel reminds us about mistakes, “…they’re the only things that you can truly call your own.” One of the hardest parts of parenting is supporting our children even when they chose poorly and against our best advice.

Helping our children overcome the trauma experience is often foremost on parents’ minds. One mindful approach for parents to adopt that has proven effective is PACE. Developed most recently by Dan Hughes and Jonathan Baylin, it incorporates Playfulness, Acceptance, discussion of the event or stressor is experienced by children in a less serious or lighthearted manner they feel less threatened and the deescalation allows for more objectivity. Acceptance is a means by which judgement is set aside and parent and child can work together to understand the problem and adapt a response.Curiosity serves to facilitate a pattern of discovery and understanding of the stressor and encourages the child to explore and make meaning of their own inner lives. Finally, a consistent empathic approach to our stressed-out children helps to reduce defensive posturing and enables children to feel visible and valued.

Another benefit of letting go of the painful past is that we can avoid re-enactment of the trauma or re-traumatizing members of the family. If we visit that crisis every time we or they are triggered by some offense or challenge, the original insult is re-enforced and brought to foreground of our emotional coping responses. This tears away at our resilience and blocks our adaptation to effective management of the issue. The same is true for our children, as they relive all the emotional baggage and hurt that originally caused them pain. Rather, we try to avoid the baggage of over analyzing, blaming, and fixing that we are inclined to do to protect our loved ones from their pain and their development of an emotional boundary against it. As we and our children battle with the challenges of life we develop a pattern of coping with stressors that leads to a mature repertoire of adaptive mechanisms that will carry us towards that success that we want and need. If we can remove that baggage from our relationships, we will be much more likely to develop the “challenge orientation” and independence that equips us with strength, determination and motivation to be successful.

One last look at our response to the trauma of the inhibitor experience, involves training ourselves to listen more carefully with empathy even when we are hearing painful and negative comments. We can easily get caught up in the rolling catastrophe of an ER visit when a physician, nurse, or child welfare advocate want to second guess causation or a remedy for a problem we’ve been coping with on a daily basis. If we hear this often enough we respond emotionally and tend to stop listening and block the sometimes unspoken meaning of it. It might be coming from a sibling of our affected children in the form of a complaint about fairness or it could be a silent acceptance of their secondary status in the family. We have to remember that all feelings are real and listening for the meaning of comments rather than just the exact details of the spoken words will help us to keep on the path of open communication. When we develop a curiosity for the meaning behind other’s statements and behavior we can begin to truly understand their motivation and needs. We are in effect “PACEing” ourselves.

Our brain’s ability to adapt and develop new connections is referred to as plasticity and it continues throughout our lives. Those triggers and traumatic stress symptoms which have been created in our minds can be altered. If we take on the challenges to develop different responses to the stressors of having an inhibitor in the family, we can reduce the power of the symptoms and retrain our minds to overcome any adversity. Change is coming and if we get behind it in a positive way we’ll have more positive and resilient outcomes.

Here are several overarching and specific goals to keep in mind

1) Monitor and regulate our own affect and model self-regulation for others

2) Observe how we’ve made the other persons feel

3) Recognize, verbalize and validate the feelings of our loved ones

4) Develop a reflective response to stressors: “What is this?”

5) Determine who owns the stressor, don’t take what isn’t yours from anyone

6) Let go of the “painful past” and focus on the positive in the moment

7) Avoid re-enacting the crisis and re-traumatizing ourselves and others

8) Learn to listen with empathy without being triggered

Charles P. Gilbert II, LCSW is a Clinical Psychiatric Specialist with the Hemophilia Treatment Center of Central Pennsylvania in Hershey PA for the past 33 years. A Licensed Clinical Social Worker, he also maintains a small private practice in Palmyra, PA, working with individuals and families to overcome adversity in their lives. Over the course of his career Charlie has spoken and conducted workshops at various hemophilia and psychiatric meetings and Inhibitor Summits throughout the United States. He has always enjoyed working in the hemophilia community and greatly admires the resilience of all the families he has met.