At Children's Mercy, that care spans a continuum that includes ECMO, specialized BPD management and one of the region's largest infant tracheostomy and home ventilator programs. The experience of 23-month-old patient Joshlynn, born at 26 weeks' gestation, who later developed severe cystic BPD, illustrates how those programs work together to support children with the most complex respiratory conditions.

ECMO Expertise for Complex Respiratory Disease

Children's Mercy recently maintained its Platinum Level Center of Excellence designation from the Extracorporeal Life Support Organization (ELSO), the organization's highest recognition for ECMO programs. Across the hospital, approximately 50 patients receive ECMO support each year, including an average of 12 to 15 neonatal patients annually.

The Division of Neonatology includes approximately 42 neonatologists, six of whom serve on the neonatal ECMO team. Working alongside ECMO colleagues across the hospital, these physicians provide specialized consultation, education, quality oversight and around-the-clock support for infants requiring ECMO.

The program has also developed experience caring for infants with severe chronic lung disease and BPD, a population many centers have historically approached cautiously when considering ECMO.

"We've been leaders in saying these children can recover and should be considered rather than excluded," said John Daniel, MD, Associate Medical Director of the NICU and Director of the Neonatal Extracorporeal Life Support Program. “ECMO is an incredibly complex support modality to provide. It is truly a team sport that involves close collaboration with our surgical colleagues. Joshlynn’s case really emphasized the great collaboration we have between our medical and surgical teams. Because of this, we can be truly innovative in our approach to ECMO support.”

That experience became critical in Joshlynn's case. As her severe cystic BPD progressed, large pneumatoceles expanded within her lungs, compressing healthy tissue and creating a situation in which surgery could not safely be performed without additional support. ECMO provided the stability needed for surgical resection of the lesions and time for recovery.

“Joshlynn’s care really reflects the teamwork and trust that goes into caring for a critically ill newborn,” said Rebecca Rentea, MD, MS, MBA, Section Chief, Colorectal and Pelvic Reconstructive Surgery. “Our surgical team worked closely with neonatology throughout her course, including when it became clear that surgical resection of the pneumatocele was needed. These are incredibly complex decisions, and having surgeons, neonatologists, and the rest of the care team working together allows us to determine the best approach for each individual child. It was very rewarding for our team to be a part of Joshlynn’s care and to see how far she has come.

For Joshlynn's family, the procedure represented a turning point in a journey that had included severe lung disease, recurrent NEC and months of uncertainty about what the future might hold.

The Children's Mercy ECMO team also takes an approach that extends beyond life support alone. When clinically appropriate, infants are supported with less sedation, allowing opportunities for physical and occupational therapy, Child Life engagement, feeding experiences and developmental activities while on ECMO. Rather than waiting until ECMO support ends to focus on growth and development, those priorities remain part of care throughout the recovery process. Joshlynn was one of the infants who benefited from that approach during her ECMO course.

Specialized Care for Severe BPD

Following ECMO and surgery, Joshlynn continued her recovery through the Children's Mercy chronic lung disease service.

Children's Mercy is a founding member of the international BPD Collaborative and participates in the collaborative's executive leadership alongside other founding institutions. Through that work, the team helps advance care for infants with severe bronchopulmonary dysplasia while collaborating with programs across the country and internationally.

Led by physicians including Karishma Rao, MD, Medical Director, Chronic Lung Diseases Inpatient Services, the program has some distinctive features.

"We don't treat a child with BPD as simply a bigger premature infant,” said Dr. Rao. “We focus on growth, neurodevelopment and the unique physiologic needs of these children."

Patient mobility, feeding progression and long-term outcomes are also important features of the program. Developmental care is integrated throughout hospitalization, recognizing that these infants have needs that extend far beyond respiratory support alone.

Joshlynn's hospitalization included recurrent NEC, feeding challenges and prolonged respiratory needs. The BPD team's multidisciplinary approach helped coordinate care across specialties while supporting her continued development during a lengthy NICU stay.

Extending Care Beyond the NICU

For many children with severe BPD, discharge marks the beginning of the next phase of care.

Through the Children's Mercy Infant Tracheostomy and Home Ventilator Program, a team of neonatologist and a neonatal nurse practitioner continue caring for many of the same children they treated in the NICU. The program follows one of the region's largest populations of infants and young children with tracheostomies and ventilator dependence, providing ventilator management, feeding support, primary care coordination and multidisciplinary follow-up.

That continuity allows families to remain connected to clinicians who have followed their child's journey from infancy through life at home.

According to Addie Begley, NP, Infant Tracheostomy and Home Ventilator Program, Joshlynn left the hospital fully dependent on ventilator support. Since discharge, she has continued progressing through ventilator weaning while achieving developmental milestones at home. She is now taking independent steps, exploring her environment and showing signs that she may be ready for additional time off the ventilator in the future.

"She's telling us she's ready," said Addie. “She is a remarkable patient with a fantastic mom who has worked tirelessly to help her get where she is today."

A Collaborative Model

Throughout her care, neonatology, ECMO, surgery, gastroenterology, respiratory therapy, developmental specialists, nursing teams and outpatient clinicians worked together to navigate one of the most complex clinical journeys imaginable.

For her mother, Brittany, the outcome remains extraordinary.

"I planned her funeral three times during this journey," Brittany said. "But Joshlynn kept proving everyone wrong."

Today, after 624 days in the hospital, Joshlynn is home with her family after being discharged in May 2026 with a tracheostomy and ventilator support. Through ongoing care with the Children's Mercy Infant Tracheostomy and Home Ventilator Program, she continues progressing through ventilator weaning while reaching developmental milestones that once seemed far out of reach. Active, curious and determined, she remains a powerful example of what can happen when advanced ECMO support, specialized BPD management and longitudinal home ventilator care are connected through a coordinated model designed for children with the most complex respiratory needs.