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.
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.
Faria’s older son, Iman, is 3-and-a-half. He was born with a syndrome known as Nicolaides-Baraitser, which is caused by a genetic mutation. As a result, he has developmental delay and epilepsy.
Faria had never seen a seizure before Iman’s first episode at 18 months of age; the seizures have gotten longer over time. The trauma of being with Iman through these seizures has manifested in panic attacks that can be triggered by everyday sounds. “That sound that he makes during seizures has turned into other sounds I hear, like a tea kettle whistling or even notifications on my phone if I am feeling a certain way," says Faria.
Elena’s younger child, Xiomara, is medically complex, born with a number of health complications that affect multiple systems in her body and required her to spend the first five months of her life in the hospital. Elena worries about threats to coverage for children with pre-existing conditions, and says that the traumas she has experienced along with Xiomara are something you carry with you as a parent.
“Unless you've been a parent with a child and the NICU, there is really no way to understand it, she tells Romper. “It is definitely a survival mode."
Enrica’s older child, Raphael, has Down syndrome. He was born with an intestinal blockage that required surgery at 2 days old and a month-long NICU stay. He has also had a series of respiratory infections that have required hospitalization. Alongside caring for her children, Enrica works as a birth doula and supports other families through NICU stays.
She wants to open up the conversation about medically fragile children and their families. “I think we have a right, especially parents with children with special needs, to celebrate the things we're kind of in the clear with,” she tells Romper. “And then we can also talk about and shed light on the challenging parts of it.” Enrica ultimately considers herself lucky. “What I didn’t know about Down syndrome when Rafael was first born, but know now, is that my son would be my greatest teacher, accomplish wonderful things, spread love to everyone he meets, and be perfect in my eyes,” she says.
Meghan lives with her daughter, Fiona, and her parents. Fiona was born 10 weeks early with omphalocele, a condition where a baby’s abdominal wall does not completely close, and their organs protrude out into the umbilical cord.
“She only weighed 3 pounds when she was born. A lot of times they will try to do surgery right after the baby's born if they can, but she was so tiny and she had so many organs outside that there was no possible way to do surgery,” recalls Meghan, who wasn’t allowed to hold her baby until she was a month old. She has had to do chest compressions on her child, and says a recent CPR training send the memories flooding back.
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.
Reporting on this story required Hillary to utilize behaviors that seem to come naturally to parents tasked with keeping their children alive: seeking out expert opinion and becoming experts in their own right, finding support in fellow parents, and advocating to the best of their abilities, all while looking after a medically fragile child.
But as these stories show, superhero moms and dads still need support. "The level of isolation I felt was impressive, even as many of the people I should have been closest to seemed unaware of how bad things were, day in and day out, I guess because I made it look easy? Or because it was easier to imagine that was the case?" writes Hillary of her transformation into the role of advocate parent.
Parents going through these experiences need not be alone. Greater understanding from those around them, it turns out, can change everything.