Jen Aspengren’s youngest son was a happy baby. That is, until he had major surgery to repair a constricted airway. Recovery for the 7-month-old required weeks in the hospital with an extended period of intubation and sedation. When he finally came home, he was a different kid.
Instead of laughing and playing, the baby (whose name is being withheld for privacy) now cried all the time. He seemed to be in so much pain that Aspengren and her husband wondered if surgeons had left something sharp inside of him. They asked doctors to check for ear infections. But in repeated visits to clinics and the emergency room, medical experts kept telling them that he looked great.
Still, despite the baby’s appearance of good health, Aspengren, who lives in Minneapolis, knew something wasn’t right. “We kept saying, ‘Something is wrong with this baby; he is not doing great,’” she recalls.
Eventually, they determined the real source of their baby’s misery: pediatric medical traumatic stress (PMTS), a type of post-traumatic stress reaction that can happen in kids after serious medical events. The condition is surprisingly common among children and their families after illnesses and injuries, research shows. Yet physicians are not routinely trained to spot the signs or help families cope. Hospitals don’t regularly implement procedures to prevent or identify it. And parents are often left feeling blindsided by a confusing, scary, and lonely road that they didn’t know they were at risk of going down.
Even after Aspengren figured out what was going on, it took her years to recognize that her experience represented a systemic gap in care that wasn’t a fluke or a result of something she had done wrong. To help others get help sooner, she launched an organization called the Alongside Network, which aims to support hospitals in filling a mental health blind spot in medical care and offer support to families after life-threatening illnesses and injuries by tapping into a wealth of evidence that people often never learn about. The nonprofit is based in Minneapolis, but its reach is nationwide.
“There is incredible research around the problem, and there is a very robust set of solutions,” she says. “It’s really adoption and spread that haven’t quite happened. We feel like it’s families that can make that spread happen through telling their stories.”
Psychological distress happens frequently in reaction to serious medical issues, even in the youngest kids, according to more than two decades of research. About 30 percent of children up to age 6 experience PMTS in the first month after a serious illness or injury, studies show. And, according to a 2021 review of 16 studies that looked at the psychological consequences of medical trauma in young children, as many as 10 percent develop PTSD within six months. More than 2 percent of those continue to have symptoms up to three years later.
Symptoms, which also show up in about a third of siblings and parents, fall into four general buckets, says Meghan Marsac, a pediatric psychologist at the University of Kentucky and co-author of Afraid of the Doctor: Every Parent’s Guide to Preventing and Managing Medical Trauma. People may have flashbacks to the moment of diagnosis or a procedure that scared them. They may avoid talking about their feelings or not want to go to the doctor. Some people get jumpy, struggle to sleep, or feel on edge all the time. Mood changes can include an uptick in anger or anxiety.
Babies and preschoolers have the hardest time accessing psychological supports, and their symptoms can be challenging to identify because they resemble other behavior issues, says Alex De Young, a clinical psychologist and research fellow at the University of Queensland’s Child Health Research Centre and Children’s Health Queensland in South Brisbane, Australia, and co-author of the 2021 review study. Little kids with medical trauma may be clingy, have tantrums, experience nightmares, not want to take medicines, or start acting younger than they are, with regressions in bathroom use or the way they talk.
It is possible to ward off PMTS by providing trauma-informed care, which can include offering realistic expectations, asking about fears, and providing consistent information. In one randomized trial, De Young and colleagues found that they could accelerate recovery after traumatic injuries in young children by offering one or two sessions that included PMTS screening, opportunities to talk, and tools for emotional regulation, like relaxing activities and soft, comforting toys. And at the University of Kentucky, UK HealthCare created a treasure hunt with prizes for kids getting COVID vaccines. Even those who were afraid of needles, they found, ended up feeling comfortable getting their shots.
Ideally, Marsac says, everyone that walks into a hospital would get some education about emotional challenges that can arise. But while some hospitals have incorporated trauma-based approaches, those strategies are still not routinely integrated into care. In a survey of more than 70 clinicians at a pediatric hospital, De Young found that only about 20 percent said they had enough training to prevent or treat medical traumatic stress in their youngest patients.
“We still have a long way to go,” Marsac says.
Instead, many parents find themselves feeling blamed for what’s happening or ignored when they express their concerns, Aspengren says. She remembers one nurse practitioner telling her in the emergency room at 2 am that she probably should just leave her crying baby to work it out on his own. That’s the opposite of what he needed, she says.
“The narrative that we culturally use is that they won’t remember, that kids are so resilient, all this bounce-back language,” she says. “What we see is that isn’t totally true.”
Going home after a hospital stay can be one of the hardest times, Aspengren adds. During a crisis, families are often surrounded by friends who step up to deliver meals and supported medically by experts around the clock. But that help disappears when they have to try to return to normal. Again and again, Marsac says, she hears from parents who feel like they’re crazy when they struggle with their child’s behavior or their own feelings after they get home. There are likely many more she never hears about.
“The people that might figure it out are the ones that are googling; they’re diving in, they’re trying to figure out what’s going on, and they’re turning over every stone,” she says. “But there might be other families out there that feel just as bad, and they don’t know why, and they don’t have the resources to dive in and figure it out. These are the families we especially need to be supporting from a health care perspective.”
For years, Aspengren talked with researchers and gathered information about PMTS. With a degree in public policy and nonprofit management from the University of Minnesota’s Humphrey School of Public Affairs, she had two decades of experience working with social entrepreneurs, establishing partnerships, and building community-based networks. Finally confident that what her family had been through was not unique, she quit her job in December 2020 and started working full-time to build the organization that would provide support for families of children after a life-threatening injury or illness. She and her team launched Alongside in December 2021.
One of the organization’s main offerings is a six-session course. The program uses a curriculum developed in Australia that teaches coping skills to caregivers and helps people connect with others who understand what they’re going through. The organization started small through word of mouth, but Aspengren says the team is working on building partnerships with a pediatric hospital and an insurance provider. One goal is for families to get calls within the first few weeks after discharge, checking in on potential signs of trauma and providing information about options for support.
Already, their work is striking a nerve, Aspengren says. At any type of meeting where someone on the team mentions the organization’s goals, someone always responds with a story about a niece, cousin, or other child they know with a related experience. Given the spotlight that the pandemic put on children’s mental health, Alongside is also tapping into a growing recognition that even young children can experience psychological distress and that those experiences deserve attention.
Carina Aleckson participated in Alongside’s first group session, which took place over Zoom starting in April 2022. Her 7-year-old daughter Ellie has Down syndrome and required an urgent birth, a stint in the NICU, and several hospital stays of a week or more for respiratory issues early in life. Then in January 2019, Ellie fell at home and broke her neck, dislocating her spine from her skull. She spent nearly two months in the hospital, needed to have a tracheostomy tube put in, and used a cervical halo for nine months. It was a long journey, says Aleckson, who works as a project manager at a large nonprofit. But because the hospital’s social workers were stretched so thin, she didn’t feel like they had the bandwidth to help them cope with the trauma.
Immediately in her first Alongside session, she says, she felt comfortable sharing in a way she rarely could with friends. The group normalized the stress parents feel when their child has a serious medical issue. With a shared experience, the connection was instantaneous.
“Because the other parents in the group have also experienced different and devastating things, I didn’t feel like I had to sugarcoat things,” she says. “I didn’t have trouble saying the real hard stuff.”
For Aspengren, it’s about time that people started to feel that kind of validation. Her son finally stopped screaming at 16 months old when, she later learned, he had reached a developmental stage where he was able to associate home with safety. But she didn’t find the right supports for him until he was 7. He’s now a healthy 11-year-old, and Aspengren wants to spare others what her family endured.
“We don’t want any family to ever wait that long.”