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.