Expert Care from Multidisciplinary Bronchopulmonary Dysplasia Team Saves Levi’s Life

Haylee and Dalton faced an impossible decision. The neonatal team at the Tennessee hospital where their son, Levi, had been receiving care for a little over a year, had run out of options and they were recommending withdrawing treatment.

Levi could breathe only with the help of a ventilator, and he often had to be sedated for the ventilator to sync with this breathing. His condition was not improving. 

"After that [had] went on for a while, [the doctors] knew they had to do something, but there weren't many options," Haylee said.

That’s when they called Cincinnati Children’s for a second opinion. Within weeks Levi was admitted to the Newborn Intensive Care Unit (NICU) and referred to the Bronchopulmonary Dysplasia (BPD) Center.

The BPD team is comprised of specialists from a variety of areas who treat patients who have conditions related to abnormalities of the lung, heart, and airway due to premature birth.

Levi, who was born prematurely at 29 weeks’ gestation in early December 2021, also suffered from a renal condition and later was diagnosed with hydrops fetalis, or hydrops, a condition that develops when large amounts of fluid build up in a baby’s tissues and organs, leading to swelling.

“He was in a lot of trouble when he came to us,” said Paul Kingma, MD, PhD, director of the BPD Center, recalling Levi’s arrival in early January 2023.

“His lungs had suffered multiple injuries—they were small because he was born prematurely. Also, his lungs were impacted after birth because he’d been on high settings of the ventilator for so long.”

Recovering, Laughing and Playing

Everything changed when Levi arrived at Cincinnati Children’s. Dr. Kingma and the BPD team immediately evaluated Levi, using MRI-based imaging tests and other technologies to identify changes they could make that might help. Eventually, they came across one change that made a major difference for Levi.

“Levi’s fundamental problem with the ventilator was that he couldn’t communicate effectively with it,” said Erik Hysinger, MD, MS, a pediatric pulmonologist. “We changed how the ventilator sensed that he was trying to take a breath, and by changing the trigger, the ventilator was able to sync with him.”

Levi soon was able to get off sedation. He could wake up, be held by his parents, and interact with the physical, occupational and speech therapists.

“He was able to start recovering,” Dr. Hysinger said.

For Haylee and Dalton, the change in Levi was as drastic as night and day.

“I don’t know how to explain it,” she said. “It was incredible watching him go from being paralyzed from the sedation to laughing and wanting to play.”

Providing Advanced Care for BPD Patients like Levi

Not every baby responds the same way to a changed ventilator setting but, Dr. Kingma noted, that’s not necessarily the point.

“Our BPD team at Cincinnati Children’s is unique,” he said. “Having a team dedicated solely to understanding babies with severe BPD means we’re able to develop a specific plan that works for the baby, going through different options systematically to see what’s successful and relying on our relationships with the babies and their families, as well as what we’ve learned by caring for them, to chart a path forward.”

The BPD team is not only unique, but also large, composed of neonatologists, pulmonologists, cardiologists, radiologists, and imaging experts, as well as nurse practitioners, dietitians, pharmacists, respiratory therapists, and nurses. This collaborative approach provides patients with unique care across multiple disciplines that isn’t available at many places, Dr. Kingma said. 

“It’s a lot of people working together to find an answer for these medically complicated kids,” Dr. Hysinger added.

Continuing Levi’s Treatment Closer to Home

Levi was discharged from Cincinnati Children’s BPD Center in August 2023.

“Our goal was to get him stabilized from a respiratory standpoint so he could continue growing and developing on a ventilator setting that providers close to their home in Tennessee would be able to work with,” Dr. Hysinger said. “But we were very clear with Levi’s mom that if she ever needs us, we’re just a phone call away.”

Although he’s currently receiving care and support at a rehabilitation facility in Kentucky, Levi is well on his way to coming home, Haylee said, noting that she and Dalton recently helped him celebrate his second birthday.

“We’re working to get him on a home ventilator at our house,” she said.

While it’s true Levi still may have a long road to recovery ahead of him, Haylee knows one thing for sure: “They saved his life, without question,” she said. “The doctors [at Cincinnati Children’s] were amazing to him and to us, and without them, I have no idea where we would be.”

Dr. Kingma hopes Levi’s story will help other families and providers realize that even though it may not feel like there’s any hope left, there usually is.

“There’s often more that can be done,” he said. “We can help improve outcomes for patients like Levi and provide them with a potential path that otherwise might not have been there.”

(Published January 2024)