A Positive Touch: Child Life Specialist Empowers and Advocates for NICU Families

A Positive Touch: Child Life Specialist Empowers and Advocates for NICU Families

When Renathe’s water broke seven weeks ahead of her due date, she didn’t panic.

When the doctors lost her son’s heartbeat 16 hours into labor, she did.

After he was delivered via emergency C-section, Samson had difficulty breathing. When his doctors decided they would transfer him to Lurie Children’s, Renathe and her husband Nik felt a wave of relief.

“I just know if anything is wrong, Lurie Children’s is where you need to be,” she said. In the Neonatal Intensive Care Unit (NICU) at Lurie Children’s, Samson was diagnosed with bronchopulmonary dysplasia. He was intubated and later went on bubble CPAP, a noninvasive ventilation strategy for newborns with infant respiratory distress syndrome. After a month of care in the NICU, he received a tracheostomy.

While Samson’s doctors and nurses made sure he breathed more easily, Samson’s child life specialist, Katelyn, worked closely with him to ensure comfort, minimize toxic stress and progress towards key developmental milestones. “Samson has had a long road,” she said. “When Samson arrived in our NICU, he was very fragile and seriously ill. My role as a NICU child life specialist is to be that extra set of hands, eyes and ears for patients and families.”

As a newborn baby dependent on various forms of technology, Samson was easily overwhelmed by his environment. Katelyn worked with him to help him adapt and become comfortable with developmentally appropriate stimulation. She also helped him build a tolerance for being handled and spoken to.

NICU Child Life Specialist Katelyn Zilles with patient Samson

Away from Samson’s bedside, Katelyn advocates for care delivery options that suit him best. She often advocates for breaks in between procedures or for care to be clustered so he can get as much rest and as little anesthesia as possible, and also to help his mom to provide positive experiences after invasive ones.

“I can go and provide positive touch and comfort measures after cares but it’s much more meaningful and important for caregivers to do this,” Katelyn says. “It helps parents bond with their children and helps them feel empowered. A huge part of my job is taking away the overwhelming feeling of an Intensive Care Unit, meeting families where they are at, and building on their strengths to help them feel like the moms, dads, older siblings and caregivers they had dreamed of being.”

Over the past few months, Katelyn has focused on empowering Renathe in her new role as a mother. “It’s really a partnership,” Katelyn said. She works with Renathe on how to hold Samson so that he can build trunk strength, calm him and non-pharmacologically manage his pain. Each week, Katelyn also organizes a support group for caregivers that Renathe always attends to learn and connect with other parents whose children are hospitalized. “She’s everything we want NICU moms to be—actively involved in her son’s care even though it’s been a rocky road.”

Developmentally, Samson has made such significant progress that he is now free to be picked up and held whenever he wants, which was impossible during his first two months.

According to Renathe, this past month at Lurie Children’s has been transformational for Samson and his family. “He’s a whole other baby,” she said. “He was so mad all the time. He would fight the nurses. He would stop breathing and turn blue. It was really hard. But now, he gets to be a baby. Lurie Children’s saved his life.”

 

Neonatology – NICU

The Division of Neonatology at Lurie Children’s, led by Aaron Hamvas, MD, provides the highest level of care to the most critically ill newborns in the region. The division cares for more than 2,000 infants each year in the Neonatal Intensive Care Unit (NICU) at Lurie Children’s and the NICU at Prentice Women’s Hospital. Our NICU is a Level III facility, which is the highest designation in Illinois for the level of specialized expertise and comprehensive resources available to treat the smallest and sickest babies. As one of the top programs in the State and the region, we received transfers from 47 hospitals last year and we consistently receive the most referrals in Illinois from other Level III NICU facilities. Our Neonatology program is ranked 17th in the nation by U.S.News & World Report.

Child Life Specialists

Lurie Children’s tries dilige​ntly to be sure that the hospital is not a scary environment for our patients and families. A child life specialist is a trained professional who helps children and their families understand and normalize the hospital environment. They are skilled at providing developmentally appropriate support, preparation and therapeutic play opportunities to decrease anxieties associated with being in the hospital.

Lurie Children’s has child life specialists located at our main hospital and also at our outpatient satellite locations who are there to help your child understand their diagnosis or procedure in an age-appropriate way. They also help support siblings, guide families through bereavement and assist in legacy making.

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