How parents of medically fragile children suffer trauma

Teresa MacMillan’s life revolves around making sure her daughter, a teenager with serious health issues, stays alive. Even her memory is devoted to the task.

“It feels like my brain only has space to remember her stuff,” Teresa said. She often forgets parts of her own day or what she did the week before. “But if you ask me anything about my daughter’s medical history, I can remember. If you ask me for a full medical history, I can give you dates.”

Teresa’s trouble recalling certain things, while others are seared into her memory, is typical of someone under high stress. She remembers one event in particular.

“Eight years ago, my daughter had surgery for a pacemaker,” said Teresa. “I made the decision to do it. After the surgery, she had one of those complications and she almost died. I blamed myself. It was horrible.”

“It feels like I’ve been in fight-or-flight for 15 years”

As the parent of a medically fragile child, Teresa has something in common with military veterans and first responders like paramedics and police officers: they are all at risk of post-traumatic stress disorder (PTSD).

PTSD is a reaction to trauma, often from single events that involve death or the threat of death. As the Canadian Mental Health Association puts it, “Something is traumatic when it is very frightening, overwhelming and causes a lot of distress.”

Like veterans and first responders, the parents of medically fragile children have constant close calls with death. Many parents of very sick children live their lives in a constant state of distress.

“There are only a few events that are as potentially traumatizing as having a child diagnosed with a medically complex condition, let alone seeing your child come so close to death” said Melissa D’Amora, a social worker and System Navigator.

Research shows parents whose babies are admitted to a neonatal intensive care unit (NICU) experience high rates of trauma, and many parents’ medical nightmares extend well into their child’s teenage years.

“It feels like I’ve been in fight-or-flight for 15 years,” said Teresa, referring to the way the body responds to extreme stress. “A friend told me she had been diagnosed with ‘chronic traumatic stress disorder’ because there’s no ‘post.’ It doesn’t end. If you let your guard down, something horrible could happen.”

Taking care of a very sick medically fragile child is “stressful, exhausting and at times debilitating. This life can bring you to your knees, it’s a crippling fear, the fear of losing your child, somedays it’s hard to get up off your knees” says Teresa. Being vigilant with a child that is so medically fragile is imperative they can be in a life threatening situation and turn on a dime. Parents are frightened, powerless, and on edge. It can be hard to concentrate or sleep. They may feel numb or removed from things happening around them. Yet they may not know how to reach out for help, or even realize that they need help.

Teresa recently participated in a two day training session on PTSD. “I thought the term ‘PTSD’ should be reserved for vets,” said Teresa. After being the mother of a medically fragile child for 15 years, she only recently realized the term could apply to her, too.

Offering support for parents who need it

The Navigator Program at the Children’s Hospital of Eastern Ontario and the Ottawa Children’s Treatment Centre (CHEO-OCTC) provides support for parents of medically fragile children, including those parents suffering from trauma.

In November, the program hosted a 2 day training session to help social workers from CHEO-OCTC, Rogers House and nurses in the Complex Care Program better understand PTSD. This training will help these healthcare facilities offer better services to parents experiencing trauma.

Navigator is designed to offer both emotional and practical support for parents struggling to keep up with the demands of having a medically fragile child. Through the program, Teresa and another parent with lived experience offer peer-to-peer support to other parents with medically fragile children. “With parents who have been around longer, you’ve been in the trenches and you want to help,” she said. She hosts monthly “Sip and Chat” groups where parents come together to talk over coffee.

The Navigator program also runs workshops on topics such as estate planning, and government programs like the Ontario Disability Support Program and registered disability savings plans.

Focusing on supporting parents is the main goal of the Navigator program. “I asked a doctor what the number one issue for children and youth health was” says Melissa the Social Worker on the Navigator Program, “he said: family health. If parents aren’t well, children feel it”. There are plans to extend even more support to parents. “The Navigator Program will be organizing future therapeutic groups for parents, with a focus on understanding trauma and acute stress and how to cope,” said Melissa.

The Navigator Program relieves some of the pressure and allows parents of medically fragile children a place to find support and be understood.

Teresa knows how important it is for parents to connect with others who understand. “When there’s someone who gets it, it’s very healing. It makes you feel less alone.”

If you think you may be experiencing acute, chronic or post-traumatic stress, contact the Mental Health Crisis Line at 613–722–6914 or 1–866–996–0991 or see your family doctor.

If your organization provides services to parents of children with complex medical needs and would like to learn more about how to support them, Navigator wants to hear from you. Visit the Navigator website or get in touch.