Helping others has been a form of healing for mother of four

MONROE — As a licensed professional counselor, Megan Schilt understands the mechanisms of post-traumatic stress disorder, the mental health condition often associated with surviving war, car accidents and assault.

As a mom, she’s lived it. Her daughter, Lennon, spent her first five weeks in a neonatal intensive care unit and suffered abuse at the hands of a nurse.

Now Schilt, the owner of Avenues Counseling in Monroe, where she works as a therapist, is in the beginning stages of organizing a nonprofit group, Project Quiet Warrior, to advocate for other “NICU moms” and get resources into hospitals to help parents and medical providers.

“There’s not enough support for parents and for the staff” in the NICU setting, and the problem is systematic, she said. “I’m working on making some changes in the system on this.”

Lennon, now 2, was one of nine babies named as victims in the case against Christopher Kaphaem, a nurse at UnityPoint Health-Meriter in Madison. In February, after pleading guilty to 19 related felonies for the abuse and neglect of his patients, he was sentenced to 13 years in prison.

Speaking at Kaphaem’s sentencing hearing “was like hundreds of pounds came off my shoulders,” Schilt said. “I was heard.”

Schilt’s story is extreme, but her experience of PTSD after having a newborn in the NICU is common. Studies show mothers of children who spend time in the NICU are at higher risk for postpartum depression and both parents are at higher risk for PTSD. That’s significant, Schilt said, because PTSD interferes with healthy attachment during the critical early years of a child’s life.

By the time Lennon was born two months early on Dec. 12, 2017, Schilt had already been in the hospital nearly two months on bed rest. Schilt had full-term, uncomplicated pregnancies for her older three children, so it was a shock when her water broke at 24 weeks for Lennon, necessitating the lengthy hospital stay followed by an induction and traumatic birth.

Being in a hospital that long made her feel “like a hypochondriac,” she said. Meanwhile, doctors told her not to worry.

“Day after day, my voice just felt smaller and smaller in a hospital setting,” she said. After Lennon was born, Schilt was in a “postpartum fog,” and in the NICU her voice felt even smaller.

“Nurses work really hard. Doctors work really hard. There’s a lot of demand put on them,” she said. But “the system is not great at focusing on people’s experiences ... the grief and trauma, and bringing a child into the world in a way different from what you expected.”

When Schilt noticed bruising on the face of her 2-week-old baby, who weighed 3 pounds, 12 ounces, she got a gut feeling something wasn’t right. She took pictures of the injuries and asked the nurses what happened. She was told, “We’ll keep an eye on it.”

She didn’t hear anything more until she saw a news story that a nurse in the Meriter NICU was under investigation for harming newborns. When she called the hospital to ask if the nurse had cared for Lennon, she was referred to a child abuse specialist.

“I reached out to the police myself,” Schilt said.

To this day, Kaphaem has given Schilt and other parents in the abuse case no explanation for his actions. All Schilt has is the physical description from a medical evaluation: her infant daughter sustained bruising from “squeezing or blows to the face.”

“That’s probably been the hardest part, trying to figure out why and how,” Schilt said.

Through it all, Schilt spent her days in the NICU with Lennon in Madison and her nights at home with her three other children in Monroe. She was driving two-plus hours daily and pumping breast milk every three hours. Even when Schilt developed a case of mastitis so severe she got a migraine and could barely open her eyes, she kept up the exhausting pace.

“It was really hard to slow down,” Schilt said. She started showing symptoms of PTSD: hyper-vigilance, avoidance, intense anxiety and fear. When Lennon’s health improved and she needed less care, Schilt felt “numbed out.” To this day, she has flashbacks to walking out of the hospital every night without Lennon, “ugly crying” and consumed by guilt.

Above all, she said, “I was very confused by how I felt.” She appreciated the medical staff at Meriter, but “they’re part of a system that I felt somewhat let down by.”

“I felt so guilty by feeling let down. ... You just look for somebody to blame, so I blamed myself,” she said.

For two years, she “stuffed down” these feelings. Then she spoke at Kaphaem’s sentencing.

“The second I used my voice, that was incredibly moving and the moment things shifted for me.

“A number of the nurses showed up to that sentencing hearing and sat with us. The nurses sat with us and cried and cried and cried. They respected us. I had a couple approach me and say how sorry they were. They were traumatized by (the abuse), too. They’re dealing with their trauma and grief while they’re sitting there with us in ours.”

She left the courtroom feeling foggy and emotionally exhausted.

“The following week that fog lifted and I felt really clear and focused,” she said. “That’s when it came to me: we can collaborate with nurses. ... There’s no reason why we can’t come together and improve the system.”

Project Quiet Warrior is still “in the preliminary stages,” Schilt said. She’s working with other moms whose babies were in the Kaphaem abuse case.

Their goals include advocating for an extension of Family and Medical Leave Act (FMLA) for parents with babies in the NICU, getting “postpartum care packages” to families and forming a network of providers to provide therapy in the NICU.

“As a parent, the last thing you want to do is leave your baby in the NICU to go to a therapy appointment,” she said.

For the past two years on Generosity Day in downtown Monroe, Schilt has set up a booth with art supplies where anyone can decorate “hope stones” to give to NICU families.

Nikki Matley, who helps organize Generosity Day through her employer, Thrivent Financial, said the hands-on activity to paint stones with notes of blessing was popular and fits in with the event’s goal to connect the community with local charity work.

“Megan has a really neat idea and a fun and engaging booth. It was something that little children through grandparents (could do),” she said.

Helping others, said Schilt, “has been hugely healing for me.”