Family members of pediatric neurosurgery patients have high rates of PTSD, researcher says

When Wendy Beaudoin accepted a position as a pediatric neurosurgery and neuro-oncology nurse practitioner at Stollery Children’s Hospital, she had no idea how closely her personal and professional lives would become intertwined.

That same day, she learned she was pregnant with her first child, Olivia, now 21. Olivia would be born 16 weeks premature, weighing just 900 grams, with a neurological condition known as complex hydrocephalus. She has undergone 76 brain and spinal surgeries since her birth.

Although Olivia still suffers from headaches and short-term memory loss almost daily, she is now stable and is studying to become a teacher at the University of Alberta. Her mother, meanwhile, is working to turn the family’s heartbreaking medical rollercoaster into new knowledge and better services for other families.

Beaudoin is recruiting eight- to seventeen-year-old siblings of Stollery patients to participate in a study of post-traumatic stress disorder symptoms such as depression, anxiety and suicidal thoughts. The study builds on Beaudoin’s previous research on the prevalence of PTSD among parents of pediatric neurosurgery patients.

In a study of 168 parents, Beaudoin found that 44.6 percent had enough symptoms to warrant a clinical diagnosis of PTSD, including disturbing memories, loss of interest in activities, feeling detached from others, and having trouble concentrating and sleeping. By comparison, Beaudoin notes that 24 percent of military combat members, 11 percent of first responders, and 25 percent of open-heart surgery patients experience PTSD.

Living in a heightened state of fear

Beaudoin first realized she might have PTSD about 10 years ago. She had just dropped her son Jake, now 16, off to goalkeeping school when she was overcome.

“All of a sudden I couldn’t breathe. I just stopped and cried,” she recalled. “It was this realization of, ‘Oh my God, this is never going to end, because she’s always going to have hydrocephalus.'”

Beaudoin describes hydrocephalus as “a plumbing problem in the brain.” A brain hemorrhage Olivia suffered as a baby destroyed the drainage pathways that normally regulate the amount of cerebrospinal fluid in her brain and prevent it from building up and putting pressure on the organ.

Treatment involves surgically inserting a thin plastic tube, a ventriculoperitoneal shunt, into her brain that drains the fluid into her abdomen, where her body can absorb it. As Olivia grew, the shunt often had to be replaced with a larger one, and sometimes it broke or became clogged. The replacement is called a “revision.”

“She’s had a lot of different surgeries, and a lot of shunt revisions,” Beaudoin said. “She’s had her skull taken apart and reconstructed to give her brain more room. She’s had the back of her brain removed. She’s had surgeries that lasted 20 hours and surgeries that lasted 20 minutes.”

Beaudoin says she worries every time Olivia sneezes or sleeps in. “With hydrocephalus, there’s always a risk — every minute of every day — that the shunt will fail.”

Talking to other parents at the clinic where she works, Beaudoin realized that they, like her, were living with this constant, heightened vigilance and fear. Just knowing that they are not alone helps.

“It’s really helpful for parents to know, ‘No, you’re not crazy. Sure, you’re not handling this situation very well right now, but it’s not because you’re a bad parent or a weak mother or father. It’s because this is a really horrible situation,'” she says.

Mental health care for everyone

It was her middle child, Mackenzie, 20, who made Beaudoin realize that it’s not just parents who suffer from this stress, but siblings, too. Mackenzie, a neuroscience major at Agnes Scott College, read her mother’s article about parental PTSD and started crying.

“Mom, I think I have this too,” she said. Her mother was shocked, but then it dawned on her: Mackenzie and Jake were there for Olivia through every predicament, every rush to the hospital, every surgery.

“They’re great students, they’re volunteering. I realized that they’re trying to be perfect because they’ve had such tumultuous circumstances and they don’t want to cause more turmoil in the family,” Beaudoin said. “It’s scary for everyone to have to be perfect all the time.”

The sibling study will begin with contact with parents to gather demographic information, after which the children will complete randomized, anonymized questionnaires. Preliminary results indicate increased symptoms of depression, suicidal ideation and anxiety, but the study is not yet complete, Beaudoin cautions.

Beaudoin recently presented her family’s experiences at a nurses’ meeting, where she talked about the parent-focused research she conducted in 2020. Her current project on siblings involves nurses from all of the Stollery’s surgical departments, including scoliosis, urology, general surgery, and otolaryngology.

After this, she wants to conduct a larger randomized trial to test whether a mental health intervention can alleviate PTSD before it occurs.

She says she finds her own support in family, friends and the close-knit surgical team she works with. She started a private Facebook support group for parents of pediatric neurosurgery patients, and she helped found the Neurosurgery Kids Fund, which hosts an annual kids’ camp and year-round family social events like bowling nights.

Beaudoin said the ultimate goal is to provide more support to all pediatric surgery patients and their families, similar to what is available through the Kids with Cancer Society, which provides mental health support and other programs from the time of diagnosis through the entire medical journey.

She believes that such a level of help would not only alleviate unnecessary pain and suffering, but would also save health care costs by avoiding the costs of caring for people with persistent PTSD symptoms.

“Everyone needs immediate and direct access to mental health care, and there needs to be consistency,” Beaudoin says.