From NICU to Home: Harper’s Journey Overcoming Chronic Lung Disease

Harper Bowman was 2 months old and on a ventilator full-time, requiring 100% oxygen when she first arrived at Cincinnati Children’s.

Her parents, Jacqui and Matt, were overwhelmed with concern. Delivered early at 24 weeks, their daughter had been diagnosed with a chronic lung disease common among severely premature infants known as bronchopulmonary dysplasia (BPD).

They didn’t know what the future would hold. They only knew that Harper’s case was so severe that she had been transferred from the University of Cincinnati to our Newborn Intensive Care Unit (NICU) for the expert help she needed. 

That’s where they met neonatologist Shawn Ahlfeld, MD, who vividly recalls meeting Harper and family that first day in the NICU. 

Harper was very ill. Her lungs were very inflamed. But her case was not uncommon to the Cincinnati’s Children’s BPD team, which over the last five years, has learned to hone their approach to the most severe cases. 

“Because of what we had learned from our experience with multiple babies like Harper, I was able to reassure [Harper’s parents] that even though the road was going to be tough, she absolutely could get better, go home, and grow up to be a healthy little girl,” said Dr. Ahlfeld. “It never ceases to amaze me how resilient babies like Harper can be.” 

Jacqui and Matt were overjoyed for the positivity. “It was extremely uplifting,” she said. 

Harper’s Care Team Includes Experts from Multiple Specialties All Working Together

Her treatment began immediately with the multidisciplinary team tailoring respiratory support strategies, medications and care plans based on Harper's specific needs. 

This care included adjusting her ventilator settings and adding medications — such as steroids and antibiotics — to combat inflammation and infection. Efforts also focused on reducing the buildup of fluid in her lungs and relaxing the lungs to improve overall ventilation. 

Harper’s care team was large and diverse, including specialists from all levels, such as neonatologists, including Dr. Ahlfeld, as well as nurses, respiratory therapists, occupational / physical / speech therapists, child life specialists, nutritionists, pharmacists, care coordinators, nurse practitioners, pulmonologists, and cardiologists.

“It took a large team of people from across all the different specialties thinking about her and caring for her to give her time to improve,” said Dr. Ahlfeld. “While it looked bleak at times and we worried that her lungs may not be able to support her, we were patient and she slowly improved.” 

Eventually, Harper became stable enough to get a tracheotomy. Following surgery, the entire BPD team worked together and met weekly to discuss her progress. 

As Harper slowly recovered, seven months passed in the NICU before she was stable enough to go to the Transitional Care Center.  She spent four months there, receiving treatment with children of all ages who also have pulmonary conditions that require tracheotomies and long-term ventilator support.

“The intensive care we provide is merely trying to buy a baby enough time to grow their lungs, and that helps them recover,” Dr. Ahlfeld explained. “The babies do all the work.” 

The recovery time needed for Harper meant an extended 11-month hospital stay for Jacqui, which she admits was difficult. But she said it was made easier by everyone in the hospital making their family feel special, particularly during the holidays — Halloween, Thanksgiving and Christmas — as well as early milestones like Harper’s first birthday.

“The hospital staff — the doctors, the nurses — they all made sure that it was special,” said Jacqui. “It seemed like they became a part of the family because all of that was celebrated with them.

“I felt like every doctor from the team knew Harper. It just seems like everybody was really in sync. It’s a whole different culture.” 

Parent Education Is Key at the Transitional Care Center

During Harper's hospital stay, Jacqui and Matt would alternate between one parent staying at the hospital and the other staying at home with their other three children. They knew it would take time, but eventually their entire family would be under one roof again. 

Before Harper could go home, though, mom and dad needed to learn how to properly care for her. That’s where the staff at the Transitional Care Center, with their focus on parent education, stepped in. 

“It was very teaching oriented. It was very focused on when you go home. ‘This is the feeding pump you will be given, and this is how you’re going to schedule her meds’,” said Jacqui.

Hands-on learning also centered on how to properly give Harper her meds, how to do breathing treatments and how to get Harper safely in and out of a stroller. 

“It sounds like a very simple task, but it comes with a lot of equipment,” said Jacqui. “It really was an eye-opener. Like, wow, she does require a lot throughout the day. But once you get into the routine, it's very manageable. And I feel like that's because of all the education they equipped us with.” 

With Harper back home, the family now enjoys quality time together and have since settled into a good routine.

Nurses come to their home four days a week to assist with the trach and the ventilator, but Harper also has regular visits to Cincinnati Children’s. These appointments include clinic visits every few months with pediatric pulmonologist Sara Zak, MD, who is hopeful that Harper will be off ventilator support within the next year.

“She will keep her tracheostomy tube for a little longer, but most kids are able to have it taken out by preschool or kindergarten age,” said Dr. Zak. 

In the meantime, if Jacqui has any questions or concerns, a brief message for Dr. Zak in MyChart brings a quick response from someone on the team.

“One thing I love about the BPD team is I feel like I'm heard,” said Jacqui.  

Jacqui’s concern could be a question about Harper in general, next steps in treatment or help needed to adjust the home ventilator. The type doesn’t matter — the team handles each request quickly and thoroughly.

“They’re just so easily accessible in communicating about anything that Harper needs. It’s wonderful,” said Jacqui. 

Harper has come a long way since her arrival in the NICU nearly 18 months ago, Dr. Zak added. And while it’s true that babies born early like Harper are at risk for complications — such as asthma or chronic lung disease — close monitoring ensures that any future problems can be identified as soon as they arise.

“Harper is growing and thriving at home with her family,” said Dr. Zak. “I think her outlook for the next year is great.” 

(Published January 2023)