1. Parents the other Patients James Bosch MFTi

2. Objectives Learn about effects of trauma on a parent of a sick baby Explore ways to support a parent experiencing trauma Understand how to support parents from expert panel’s first hand experience’s as patients

3. Multiple Traumas Early, unexpected or difficult delivery Seeing child have traumatic medical procedures Life-threatening events Witnessing others infants going through same Serial bad news Never knowing what to expect each day Etc.

4. Traumatic Event An event which the person witnessed or experienced that involved actual or threatened death or serious injury to self or others, and the person responded to with fear, helplessness or horror.

5. PTSD Re-experiencing the event — For example, spontaneous memories of the traumatic event, recurrent dreams related to it, flashbacks or other intense or prolonged psychological distress. Heightened arousal — For example, aggressive, reckless or self-destructive behavior, sleep disturbances, hyper- vigilance or related problems. (jumping at beeps and alarms.) Avoidance — For example, distressing memories, thoughts, feelings or external reminders of the event. (even avoiding baby.) Negative thoughts and mood or feelings — For example, feelings may vary from a persistent and distorted sense of blame of self or others, to estrangement from others or markedly diminished interest in activities, to an inability to remember key aspects of the event. DSM 5

6. Responses/Behaviors Tearful Depression Emotional overwhelm Numbing Hopelessness Shame Decreased Concentration Loss of interest Angry Anxious Shutdown Restless Irritability Generalized anxiety Panic Attacks Headaches Insomnia Nightmares Fear Confusion Substance abuse Guilt Horror Flashbacks

7. “What the parent is going through is more or less dismissed because what you’re contending with are the health issues of your child. Occasionally a social worker will say, ‘Are you taking care of yourself?’ but never, ‘This is a traumatic experience you endured and you need to pay attention to these symptoms.’ ” Vicki Forman This Lovely Life

8. Influences Mental health before birth Social stressors Economic stressors Marital/relationship stress Family support Culture Not all family members will go through exactly the same process in the same way.

9. Restoration of Control and Safety Judith Herman – Trauma and Recovery Recovering a Sense of Safety Remembering and telling ones story Reconnecting to life

11. What Helps? Peer support Support groups Individual/family therapy Extra empathetic listening/supporting Connection with long-term support Supporting grief

12. What we say Matters At least she is alive. “You’re so lucky that you didn’t have to go through the end of pregnancy!” “At least, with the baby in the NICU, you can get rest at night!” “He’s so small!” “When will she catch up?” “What did you do, that he was born so early?” “Everything happens for a reason.” “Now that she is off all that medical equipment, everything will be fine.” “You’re just being paranoid about his health.” “She needs to be exposed to germs to build up immunity.” “He’s how old? My child is the same age and twice his size.”

13. Meghan Bronson’s Principles for Supporting Grief PRINCIPLE #1 The truth spoken with care and compassion catalyzes the emotional healing process. Withholding or distorting truth complicates grief and feeds denial. Therefore, support compassionate truth telling. PRINCIPLE #2 People are doing the best they can with the tools they have to work with. Acceptance is more helpful than judgment. Therefore, avoid judgment.

14. Principles for Supporting Grief PRINCIPLE #3 There may be differing values and even spiritual beliefs within the same family. Many families will have different values and belief systems than yours. Recognize, respect, and honor difference. PRINCIPLE #4 Facilitating saying good-bye supports closure and facilitates healing later on. Interfering with the process of saying good-bye blocks healing in individuals and families. Support families including children in saying good-bye.

15. Principles for supporting grief PRINCIPLE #5 Feelings are neither right nor wrong, good or bad—neither are they necessarily logical. Feelings need to be heard respectfully and without judgment. Feelings do not need to be interpreted or analyzed. Show respect for and honor feelings. Balance Point, Inc. Megan Bronson RN, MSN, CS 2003

16. The Experts!