Grit, Resilience, and Recovery: Trauma and Caregivers of Children with Medical Complexity

Learning Objectives

  • Discuss why is trauma so common for caregivers of children with medical complexity
  • Discuss how does trauma impact caregivers of children with medical complexity
  • Discuss what can be done

Can’t make it to the session?

Didactic Materials

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Didactic Presenters

Kathy Netten, RSW

Registered Social Worker

Natasha Baril

Parent Partner

POSSIBLE TRIGGER WARNING | PTSD OPEN DISCUSSION​

Following is a blog post written by Natasha Baril, our parent partner for this very special ECHO session in relation to the SickKids VS: This is Why Video.

For those of you that have had to stay at Sick Kids Hospital, CHEO or any other hospital; testing, investigating, preventing, treating, recovering, or losing a child… I see you. I’ve been to some of those places myself and being a parent of a child with complex needs; I will be there again soon enough, I am sure. I watched this video I shared because I love and usually feel so validated by the Sick Kids commercials. However, this time was different. I have been diagnosed with Post Traumatic Stress Disorder, as a result of everything we have been through with our daughter medically and how many times I thought I was losing her before my very eyes. As it turns out, tonight was the perfect night to be completely triggered by the video instead. If you or anyone you know experiences triggers and has flashbacks; please do not take them lightly…they are absolutely awful.

The video shows the halls and rooms, doctors, nurses, sick children and their parents/caregivers. It shows the bright overhead lights and even has the hospital background soundtrack of machine beeps and buzzes… and in an instant I’m transported back. My body is paralyzed in fear and uncertainty. I sit completely still, as I am then flooded with it all again; without the ability to “snap myself out of it” or “just think of something else.” 

First, I smell the smells of the hospital; Tim Hortons, Food Court, EEG glue, the floor cleaner the house keeping staff use, the arrowroot cookies I would take from the kitchenette when I was too nervous or busy to eat an actual meal; just to hold me over until the next package of cookies. 

Next, I see flashes of still pictures in my mind; there I am on 7D when we didn’t know what was happening with our child and she got a nasal feeding tube inserted.

BOOM

I’m by the elevators when a child I don’t know collapses and I see the fear I feel as a parent for my child, written all over the faces of the parents of that other child

BOOM

Code Red…fire…

BOOM…

My daughter is screaming in terror as they hook her up for another EEG looking to me to help her and I’m stuck trying to comfort her when there isn’t anything I can do because I know she needs it…

BOOM…

Xray results and I see myself breaking down when she had her hip brace put on and it was winter and I realized I couldn’t put her pj’s back on.

BOOM…

7B | October 17, 2019:

Five words that would change our lives forever:
Pyruvate Dehydrogenase Complex Deficiency Disorder.

BOOM…

There I am, asking the doctors,

“Am I going to lose her?”

and the doctors replying to me:

“Yes.”

BOOM…

I’m sleeping in the playroom on a cot in 7D with other mothers I don’t know because my husband is in the room with our daughter that night…..

BOOM…

“CODE BLUE 7D, I REPEAT CODE BLUE 7D”

BOOM…

”wait? we’re on 7D and I’m not with my daughter….everyone is rushing”

“let me get to my daughter”​

”ma’am go back to your room please”

”is it my daughter?….TELL ME IT ISN’T MY DAUGHTER?!?!?!”

BOOM…

I see the child being rushed away….

BOOM…

RELIEF the child wasn’t mine… this time…

BOOM…

Intense HEARTACHE for the parents walking behind their child.

TEARS… 

  • Tears for myself,
  • Tears for that family,
  • Tears for the medical and hospital staff for which these scenarios have become just another day at work
  • Tears for my future self when it may be our turn to have a code blue called for us
  • …so many tears….

there are…

so many tears… here…

BOOM…

I’m in my living room crying in real time… my daughters are safe and sleeping soundly. I’m comfy and cozy, so why do I feel like I am in a crisis? I’m crying, hot, heart is racing, I’m breathing fast and instantly feel sick to my stomach…..this my friends is THE POWER OF TRAUMA. The stuff that we are exposed too for our own children is really hard, but the things we are forced to witness when were in hospital caring for our children is also more than anyone should have to go through. I am trained in mental health, I am trauma informed, I see a Social Worker, Psychologist, Psychiatrist and am actively working on processing all of this and I was still triggered. So please… if your mental health has declined since being a caregiver, it is understandable, but is often too much for us to deal with on our own. If you feel like you need help, reach out to a formal professional to work on whatever is needed so that you can continue to be the best caregiver for your loved one as possible. 

I share the video not to trigger others hopefully, but to prove to myself that I am using my trigger for good; to spread awareness to those that fortunately don’t have to understand hospital life and for those that do and may need help like myself versus resenting and feeling ashamed that I was triggered again, which is a huge step in my recovery process. 

From my heart to yours, 
Natasha