This Changes Everything

A Look At PTSD In Parents

It is clear that PTSD is a factor in the lives of parents, especially mothers, raising children with disabilities. Through recent research studies, we know that moms raising children with Autism have stress hormone levels consistent with those of combat veterans. We know that NICU stays can produce PTSD in new parents, especially new mothers. Caregivers of children with complex medical conditions face a 4-fold increase in risk for PTSD compared to the general population. But is also clear that PTSD is dramatically underdiagnosed in the parents of medically fragile children.

Parents may be unlikely to bring up their own health concerns with their children’s medical teams, and, even if they recognize their need for support, they may face significant financial and logistical barriers to receiving care. As this project illustrates, what can change is for there to be a greater awareness of the impacts caregivers whether while fighting for their childrens' lives, and for medical staff, friends, and family alike to acknowledge these experiences, rather than shy away from them. What can change is the view of parents as superheroes who were somehow made to withstand a life of uncertainty surrounding their children's health. They aren't superheroes. They are parents like you. These are their stories.

Avingdon, Maryland

Mackenzie’s daughter, Adelaide is 4 and has a mutation in the gene SCN8A that leads to epilepsy, developmental delays, and a movement disorder. Mackenzie didn’t know anything was wrong until Adelaide’s first seizure at 6 weeks old, when her husband had to do CPR. The family found a specialist who understood the specifics of Adelaide’s condition; someone they trusted and a key piece of their support structure. Later, that doctor passed away.

Mackenzie experiences avoidance symptoms and flashbacks of Adelaide’s seizures, but says she feels almost selfish for feeling any anxiety over what her daughter has been through, “because I'm not the one that's going through it,” she tells Romper.

"How I Came To This Story"

Six hours after giving birth to Esmé, reporter Hillary Savoie discharged herself from the hospital to be by her daughter's side in a NICU 10 miles away. The PTSD she experiences might date to Esmé's birth. Or it might date to the day, months later, when she carried her daughter's limp body into the emergency room. Or it might stem from any number of emergencies in the years since.

Hillary's experience with PTSD is personal, and led her to reach out to other parents about their experiences. The result is this project.