Camarion’s Story: Overcoming Extreme Prematurity With All-Encompassing NICU Care

When Tisha’s son Camarion arrived four months ahead of his due date in March 2020, she was prepared to do anything necessary to support him. “It was a big challenge, not only for me but it was a big obstacle to overcome for my family,” she said.

That Camarion was born at the start of the COVID-19 pandemic, when hospital visitors were limited, posed additional complications for Tisha and her family. Still, at Lurie Children’s Neonatal Intensive Care Unit (NICU), a team of specialists was ready to diagnose and treat conditions affecting Camarion’s health as a result of his extreme prematurity while offering the supports his family needed to stay involved in his journey and bond with him.

A Healing Home Away From Home

Camarion was diagnosed with bronchopulmonary dysplasia (BPD), a form of lung disease common among premature babies. Because his lungs had not fully developed before he was born, he needed technology to help him breathe while he continued to grow. The BPD team worked closely with Camarion’s parents to inform them of their options in his care and explain the nature of the disease.

“I didn’t know anything about BPD before Camarion was born,” Tisha said. “The NICU supported me in every way they could. They treated Camarion with the right care he needed. I truly appreciate all his nurses that treated him with love and care.”

He also experienced significant bleeding in his brain early in his life and required neurosurgery at Lurie Children’s. After surgery, Camarion underwent speech, occupational and physical therapies to help minimize developmental complications that often come with prematurity. Respiratory therapists also supported his breathing to keep him strong and energized throughout his therapies.

As Camarion grew stronger in the NICU, his team provided wrap-around support that served his progress and empowered his first-time parents to be actively involved in his care. Child Life Specialist Katelyn Zilles spent one-on-one time with him to support his development, organized virtual visits with his family, coordinated therapies and offered developmental support when family could not be at his bedside.

“Tisha was a natural with him; his medical complexities were never a barrier,” Katelyn said. “I was focused on supporting his infant development and sending updates to his family so she felt involved every step of the way with his ongoing progress.”

Throughout Camarion’s medical procedures, Katelyn offered a relationship that helped normalize the hospital environment. “Families of our BPD population are here with us for a very long time. When you basically live here, it is really on us as staff to normalize the environment, bring the outside in and adapt it to our families. Tisha thrived on that. She made the best of it. We could bring memory-making moments that allowed her family to live a life here.”

Bonding Through Music

Music therapy also played an important role in Camarion’s progress in the NICU. Lurie Children’s music therapist Jacqueline Vilca spent time with Camarion, using music to soothe him, allow him to socialize, practice moving and provide sensory stimulation.

Music therapy gave Tisha and Camarion opportunities to bond, both virtually and in person. “It was a great way for them to bond,” Jacqueline said. “If he heard her voice, she could watch how he responded and share those special moments with him.”

“Music therapy can be personalized. We did the songs his family requested for Camarion to hear, and I could change lyrics to include positive messages that his family wanted them to hear. I’d sing about him being strong and brave, which was a really positive thing for his family.”

A Birthday Wish Comes True

After spending his first 364 days in the NICU, Camarion’s family welcomed him home on his first birthday in March 2021, celebrating with a Mickey Mouse-themed party at home.

“Camarion is such a resilient patient,” Katelyn said. “By the time he went home, he was gently cooing, exploring different textures, increasingly social, liked to make eye contact, and loved to play. He is so playful and sweet.”

“When we first got home, we were happy that I was able to actually have a family experience as a mother. I was happy that I was able to hold him and give him the love he needed in person, face to face.”

Tisha has adjusted to Camarion’s ongoing medical needs, which includes a tube for feeding, while she pursues a nursing degree. “At first it was hard to adjust to doing his feeds every four hours with his G tube, but now we have everything down pat and are giving him the care he needs. We are excellent with the G tube and love taking care of it.”

“Things for us today are wonderful, and I appreciate all his caregivers who know him so well.”  

 

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