Twin Sisters Growing Stronger and Healthier One Year after Chronic Lung Disease Diagnosis

The commitment is made by every doctor working in Cincinnati Children’s Bronchopulmonary Dysplasia (BPD) Center.

A unique cornerstone of patient care, it's been in place in the Cincinnati area for many years and, since the BDP team was formed in 2017, has helped save the lives of many sick babies, including twins Layla and Louise Lienhoop.    

“It” is a system in which Cincinnati Children’s experts, including those from the BPD Center, provide neonatal care to all preterm infants born at local hospitals throughout the greater Cincinnati region. 

This allows for early detection and treatment of babies that are diagnosed with bronchopulmonary dysplasia (BPD), a chronic lung disease common among severely premature infants.

Once identified, babies are transported to Cincinnati Children’s Level IV Newborn Intensive Care Unit (NICU) for the advanced care they require. 

According to neonatologist Shawn Ahlfeld, MD, clinical co-director of the BPD Center, a majority of their BPD patients are identified as Cincinnati Children's neonatologists provide neonatal care during these rotations.

“We’ve built collaborations with each hospital in town to staff their NICUs with our nurse practitioners and physicians," he said. "At an early age we present identified patients to our BPD team via virtual meetings to allow access to a host of medical providers as part of a BPD-focused multidisciplinary care team.” 

Recognizing BPD Early, Creating Treatment Plans and Long-Term Goals

Layla and Louise were 5 weeks old and very sick when Dr. Ahlfeld first met them and their parents, Lynae and Cole, while he was performing rounds at St. Elizabeth Hospital in northern Kentucky.  

“I remember thinking I need to give them a picture of what this is going to look like because I could tell they were scared. They were scared because they didn’t know what was going to happen tomorrow,” said Dr. Ahlfeld. 

After years of watching the vast majority of sick BPD babies get better, Dr. Ahlfeld was confident that, with time and patience, both Layla and Louise would do the same. 

“I tell [families] ‘it’s gonna be rough, but we’ll get you there, and you’re going to be OK. Here's what we do first, and here's what we do next. And here's how long it usually takes,’ and I try to just paint that picture for them.” 

Lynae and Cole will never forget that first encounter with Dr. Ahlfeld. He answered their many questions and provided a sense of hope when they desperately needed it.

“He immediately recognized what the girls were struggling with. And even at that time, he had a really good prediction on what their course of treatment and their long-term goals would be,” said Lynae. “He’s incredibly easy to talk to and he put things in very layman's terms for you to understand it.” 

These conversations, she added, were “very encouraging because he has worked with so many kids with BPD. We had a peace of mind and knew these are now our next steps.” 

Outlining the expected treatment plans for both girls, Dr. Ahlfeld explained how Layla was sicker than Louise and likely would need a tracheostomy. 

“Putting that thought into our heads was helpful that early on,” said Lynae. “We had gone from [not knowing] what tomorrow will hold to actual goals. And knowing what the next steps would be in [our babies'] care.” 

Growing Stronger in NICU with Shared Smiles Between Sisters

Layla did indeed require a tracheostomy, and since her BPD was more severe, she had a longer hospital stay. She remained in the NICU for several months longer than Louise, before moving to the Transitional Care Center (TCC). 

Frequent visits from her sister, though, brightened Layla’s spirits as she continued to improve and gain strength in the hospital.  

“It melted everybody’s heart. Every time the girls saw each other—well, they still do—they light up and they get so excited,” said Lynae. “And especially when Layla was having really, really hard days, she would still give her sister a smile.” 

Seeing familiar faces during their extended hospital stay was something that Lynae appreciated, as well. For her and Cole, they couldn’t help but smile when they saw firsthand how the team of advanced practice nurses (APNs) cared for their children like they were their very own. 

“It's nice when you can see that relationship building,” said Lynae. “When you can see the affection that they have toward your child and know that they have your child's best interest in their heart because they truly care about them.”  

It’s a privilege that’s not taken lightly, according to Melissa Kingma, MSN, APRN, one of several nurse practitioners who cared for the twins and who still sees Layla and “LuLu” for NICU follow-ups. 

“I truly love these patients,” she said. “They stay with us the longest of all our diagnoses, so we get to see them turn into a little person and see their personality emerge. It is a privilege to take care of them.

“It was a joy to see them both develop personalities. Layla loved giving big smiles. LuLu has become an expert at crawling and trying to play with all of Layla’s suction supplies. And Lynae is the ideal NICU mom. She is so involved in the girls’ care, and they’ve had such a great outcome because of her presence.” 

Care Teams Help with the Transition Home

Just as Dr. Ahlfeld credits the entire BPD and NICU teams for the success of patients like Layla and Louise, Lynae credits the dedication and hard work across Cincinnati Children’s—and specifically those in the TCC—for her daughters’ continued progress. They also helped ease the family’s transition to home.

“They have a great training regimen for everybody and checklists for you, so they know that you're confident in taking care of your baby before you take them home."

Lynae and Cole have learned so much over the past year, in fact, that friends talk about potential career changes for the couple.

“People joke all the time that now my husband and I can get our nursing degrees,” Lynae said. “And I go, ‘No, I just want to know enough to take care of my girls.’ ”

(Published May 2023)