Meet Levi

The lungs are last to reach full development in utero. So, when Levi and his twin brother Leonard were born in Chicago, Illinois at just 24 weeks, they were given a less than 20% chance of survival. Sadly, Leonard passed away two days later as a result of his very premature lungs. Levi was diagnosed with severe bronchopulmonary dysplasia (BPD), a chronic disease that can occur with underdeveloped lungs. Levi was brought to a local children’s hospital and placed in a medically induced coma and on a ventilator to help his lungs grow and heal. Doctors implemented a ventilation strategy, standard for the level of severity Levi was facing. This strategy had a side effect that caused his face to swell. “There were multiple times where the doctors and nurses thought it'd be his last night with us” shares Levi’s mom Ulyssa.

Though following the standard of care for Levi’s diagnosis, the treatment plan was not working for him. “[The local children’s hospital] sat me down for a meeting to discuss a new care plan and to my surprise it was a meeting to discuss comfort care,” recalls Ulyssa. “I felt as if the rug was swept from right under me and I was falling into the same dark hole when I had lost his brother, Leonard.”

That’s when Ulyssa reached out to Nationwide Children’s Hospital for a second opinion. Ulyssa met with Dr. Edward Shepherd, Section Chief of Neonatology, Medical Director of Critical Care Transport, Medical Director of Neonatal Network Respiratory Therapy, and Interim Medical Director of the Comprehensive Center for Bronchopulmonary Dysplasia Outpatient Clinic. “I expressed to Dr. Shepherd that I needed them to see Levi for who he is and not through medical records,” shares Ulyssa, “That even if his chances of survival could be increased by 5%, I'm willing to take the leap of faith. He said, ‘I can't promise you that, but we will take him.’”

Upon arrival at Nationwide Children’s, an alternative ventilation strategy was adopted and yielded positive results for Levi. His swelling went down just two days after arrival and his parents were able to see his eyes fully opened for the first time in five months. Later the same week, Dr. Matthew Kielt, Neonatologist in the Comprehensive Center for Bronchopulmonary Dysplasia provided more hope, sharing with the family, “I can't tell you how long he'll be here, but I can tell you whether or not he will make it. And Levi will make it.” Though hesitant to believe such positive news, Ulyssa began to see the great improvements in Levi the team was seeing, participating in therapies, recovering well from many procedures including g-tube placement, two hernia repairs, and a liver biopsy, playing, and even celebrating his birthday.

The last step before going home was to be transferred to Dr. Richard Shell, section chief of the Department of Pulmonary Medicine and his team where Levi’s ventilation and medications were weaned. They took their time and went at Levi's pace, no matter how slow he wanted to go. Anticipating Levi would be home after Christmas, this little fighter surpassed expectations and was discharged in October, “just in time to celebrate all three of our favorite holidays,” Ulyssa remembers.

“Our family will forever be grateful to Nationwide Children’s, after battling a journey for so long, it felt nice to have a firm, helpful, and hopeful hand. Nationwide Children’s was there for our family at our darkest time and now we proudly say they saved our son.”

Though Levi is still considered to have chronic lung disease and remains on an at-home ventilator, his lungs have improved greatly and continue to get stronger. Levi is now a smiley and joyful two-year-old reaching milestone after milestone that in the past seemed so uncertain. “He loves to read, clap, laugh, crawl around the house, sit up on his own, bounce, and play with his blocks and tambourine,” says Ulyssa, “He also enjoys long walks at the park and gazing at the sky and sitting in his kiddie pool and splashing water.”

“One thing about Levi, he loves to smile. He has the biggest smile with a glow in his eyes…I couldn't thank Nationwide enough for granting us these moments with our little guy.”