Child Life creates a home within the Stead Family Children’s Hospital

For kids and teenagers staying in the University of Iowa Stead Family Children’s Hospital, the world narrows. Many patients cannot venture from the hospital for more than a short walk outside, if their treatment allows them to leave their floor at all.

The pandemic has shrunk 17-year-old Shane Mullnix’s world to just his hospital room. He occasionally has the opportunity to go on a walk around the floor, but the only sun he’s getting comes from the large windows in his room.

That window served as a backdrop during a Zoom interview with The Daily Iowan, casting Shane and his mother, Tina Mullnix, into shadow. They sat on a couch together, Shane’s face bare and Tina’s covered by a disposable mask.

“He misses his dog, and his room,” Tina said about their home in Williamsburg.

Patients in the state’s only nationally ranked children’s hospital are especially at risk for developing serious complications from COVID-19. Because of that vulnerability, the hospital’s normal lively, bustling building has been locked down since the first few cases of the new virus appeared in Johnson County 13 months ago. But Child Life specialists at the children’s hospital work to bring a spark of joy into the now-emptier hospital.

Everyone is required to wear at least a mask when interacting with patients, including the Child Life Specialists that stop by every day to hang out and play. They also wear face shields and gloves while in rooms.

Since the COVID-19 pandemic came to Johnson County, University of Iowa Hospitals and Clinics has implemented practices to keep patients and staff safe. In the 190-bed Stead Family Children’s Hospital, pediatric patients can have parents or guardians come to visit but no other family members are allowed, including siblings. This policy has been in place since March 2020.

Throughout all this, Child Life has continued to engage patients in activities and play, helping them and their families cope with the stresses of their hospital stay. Individual and group programming is created by Child Life to meet the emotional and developmental needs of patients and their families. The resources they provide help kids and families cope with the stresses and emotions surrounding their hospital stay.

Child Life Specialist Lisa Miguel said what Child Life does hasn’t changed during the pandemic — their methodology has.

“A lot of what we do in Child Life as far as education and play has changed, the types of things that we’re educating on obviously have changed you know with COVID, like what is coronavirus and, why do I have to wear masks so much … there’s a different focus,” Miguel said. “But like I said most of it, you know, is pretty similar to what we would do on a daily basis.”

Shane said he hasn’t noticed much of a change in his individual activities with Child Life. Someone stops by every day to drop off activities or hang out like they always have, offering a distraction from tests, procedures, or just boredom.

“Nothing really has changed [with Child Life coming in], we’re just not able to see their faces,” Shane said.

“And, well, we know what they look like,” Tina joked.

Shane has bounced in and out of UIHC since he was born in 2004 and diagnosed with hypoplastic left heart syndrome, a congenital birth defect that stops the left side of the heart from forming correctly. He received a heart transplant as an infant in 2004, and visited the hospital consistently for his heart.

In 2016, Shane suffered a heart attack and doctors implanted a Pacemaker to help his heart beat. He left the hospital again, but had to return in October 2020 when he was diagnosed with coronary heart disease and went back on the transplant list. He’s stayed in the hospital with his mom ever since.

Doug, Shane’s father, visits when he can in between his work as a semi-truck driver. Shane and Tina FaceTime with family, especially Shane’s sister, every day. She’s visited Shane once in the hospital since he was admitted because of the strict visitation limits.

For the past five months, Child Life has stepped up to fill up what gaps they can.

“They’re our family away from home, because we can’t see my parents or nobody, so they’re our family now,” Tina said.

Tina has left the hospital only a couple times since Shane was admitted to complete necessary errands, since she needs to isolate as much as possible to keep him safe. She sleeps in his room on a rolling bed, with a curtain hung between them to give some privacy.

She is leaving the children’s hospital today, however, to receive her first dose of the COVID-19 vaccine.

Child Life Specialist Lisa Miguel is more like family than most in the hospital to the Mullnix’s. Lis has known Shane since he was a baby, and has worked with his family through every stay in the hospital. She spends time  with Shane often, and said she mostly lets Shane direct what activities they’re going to do. She’s worked at the children’s hospital for 19 years, and met Shane in her second year.

The two recently finished a painting together, which Shane displays proudly in his room. . The painting depicts a boy shining a light into the night sky, revealing the dawn. They are also creating a music video where Shane raps Eminem songs.

“I was just fresh, a couple years into my career when I was able to meet Tina and her husband Doug and their brand new baby boy Shane. It’s crazy to think that he’s now 17 and I’m still here and he still tolerates hanging out with me,” Miguel said, laughing.

Miguel and other Child Life Specialists’ days begin by checking with hospital staff for any procedures they should be present for, to support patients and keep them calm. They spend their mornings with kids going through blood draws, IV insertions, and exams, and the rest of the day is spent attending to individual kids’ needs and preparing programming.

No one day is the same, Miguel said, and she likes it that way. Every patient is unique, so Child Life Specialists need to cater to their needs and interests when interacting with them, finding the best way for each patient and family to cope with being in the hospital.

Before the pandemic, Miguel would blow bubbles with kids to teach them how to regulate their breathing during tests. Now she’s limited to using bubble wands that generate bubbles without blowing, which while fun and distracting, don’t serve to coach kids through steady breathing.

“I think that’s been the biggest thing that I miss out of my toolbox,” she said.

She’s not the only one who’s lost some avenues of helping patients. Music Therapist Kirsten Nelson said she’s been limited when trying to make music with kids by how certain instruments and singing can spread particles.

After researching cases of community spread in choirs and bands and learning about what makes potential COVID-carrying particles  spread more easily, Nelson and other Child Life Specialists came to the conclusion that they can’t sing along with patients, and must sing at a quiet volume with a mask on.

So, Nelson spends her days in hospital rooms singing to patients instead of with them, and at no louder than a speaking voice. Even special occasions, like holidays and kids leaving the hospital, only allow Nelson to sing on her own. She explained in a hoarse voice that even at  a quiet volume, her throat still gets very dry in the hospital after singing all day.

“We just had a goodbye party … I had to just be the only one singing the song. We can’t do the, ‘Woohoo, it’s your last chemo, or you’re going home,’” Nelson said. “So that’s been hard for the staff.”

Further, all in-person group activities have been suspended since the COVID-19 pandemic began, keeping Shane and other patients from interacting with each other face-to-face. These activities include bingo, arts and crafts, movies, making food or treats, and music sessions.

Before the pandemic, Child Life would hold daily group sessions for patients and their siblings, letting them engage in play and helping them create a community within the hospital. Different days brought different activities, and some groups allowed kids of similar ages to meet with their peers.

Tina said Shane misses attending  group Child Life activities, since he doesn’t get to see kids his own age and socialize.

Group activities are now held through closed-circuit TV. At 2:30 p.m. every day, patients can tune in and participate in games or watch performances such as magic shows, following along or calling in to the specialist running the program if they want.

Thursdays are reserved for music therapy with Nelson, when she leads patients through games like music Jeopardy and music bingo, and holds a monthly ukulele lesson. Each patient gets their own color-coded ukulele to use in their room and play along with Nelson, who strums on her own instrument from an empty room in the hospital.

Living in the hospital can be isolating even without the pandemic keeping everyone separate, Nelson said, so those in the Child Life program do what they can to engage patients in group activities. Before programs are set to begin, sometimes Nelson or others will go from room to room, encouraging patients to hop on if they want to.

“As Child Life Specialists, one of our main goals is to maintain normalcy while children are hospitalized,” Child Life Specialist Emily Baxter wrote in an email to The Daily Iowan. “Although the group activities are virtual, we strive to provide activities and games that children would be participating in at home or school.”

Each Child Life Specialist the DI spoke with agreed that throughout the pandemic, children  in the hospital have been incredibly resilient. Despite some challenges at the beginning at the pandemic with patients being apprehensive about not being able to see people’s whole faces, they’ve just gone with the flow, Miguel said.

There are some silver linings to the pandemic for children  in the hospital, Nelson said — they can  participate in school with their friends online instead of missing in-person classes and using different online school programs.

Shane, however, doesn’t participate in school with his peers; he does his 11th-grade classes asynchronously with hospital teacher Megan Soliday working with him. He’s completed five courses during his stay.

Many patients accept  illness and the struggles that come with it, Nelson said, so she’s seen the kids she’s interacted with just put their head down and move forward with determination to march  through the pandemic and return  to a more normal life.

“I feel like [the kids] cope way better in many ways than some adults I know,” Miguel said.

Tina and Shane are still holding out hope of being able to go to his sister’s graduation in May, but they aren’t sure how safe things will be with the pandemic. While they wait, Shane said, having Child Life Specialists like Miguel around gives him another person to talk to, and laugh with.

“If it wasn’t for [Child Life], these kids wouldn’t have anybody,” Tina said.