End-stage Lung Failure Program Provides Hope for Patients with No Other Options

The End-stage Lung Failure Program at Cincinnati Children’s was born out of the goal to help children with lung or heart-lung failure who may otherwise die without advanced care. A team of physicians specializing in lung, heart and critical care created this program when they recognized that the medical center’s capability and expertise to deliver such care can provide new hope for kids who seemingly have no other options.

“Those who may benefit from this program include children who are declining despite all therapies available to them or are at a level of illness from which they cannot move forward,” explains David Morales, MD, director, Congenital Heart Surgery.

Morales is co-director of the program, along with Don Hayes, Jr., MD, MS, MEd, medical director, Lung Transplant Program, and David Cooper, MD, MPH, medical director, Cardiac Intensive Care Unit (CICU).

Multidisciplinary care makes program possible

The program is a collaboration among the Heart Institute and the medical center’s Pulmonary and Critical Care divisions. Providers from these specialties collaborate to care for children, adolescents and young adults with end-stage acute lung failure, chronic lung failure or combined heart-lung failure.

This team has unique expertise in caring for patients who are critically ill and require various forms of cardio-respiratory support, including advanced techniques of mechanical ventilation, extracorporeal life support—such as extracorporeal membrane oxygenation (ECMO) or lung assist device (LAD)—or specialized surgeries such as a Potts shunt. “We’re able to offer this highly specialized care to either bridge patients to recovery, which is always our hope, or to lung or heart-lung transplantation,” Morales says.

The program is the first in the country to focus on a comprehensive strategy for end-stage lung failure in children of all ages.

The medical center saw this opportunity to help the sickest of children from around the nation due to its wide array of medical and surgical expertise unique among children’s hospitals. This allowed for the creation of a multidisciplinary care team comprising several world-class services including but not limited to the following:

• Cardiac Intensive Care Unit
• Pediatric Intensive Care Unit
• Rare Lung Diseases Program
• Pulmonary Hypertension Program
• Mechanical Circulatory Support Team
• Transitional Care Center
• Bronchopulmonary Dysplasia Center
• Cystic Fibrosis Center
• Pulmonary Disease Pathologist
• Transport Team

“These teams are vital components of this innovative approach to care,” Cooper says. “Once the patient is here, we can pull in all the specialists needed to determine whether the patient can either recover from lung failure, or if they need to be bridged to lung transplantation.”

House fire victim receives lifesaving care

Last year Quintavious, then age 11, was in a house fire in Alabama. As a result, he suffered from lung injury. His respiratory support was escalated to ECMO, with no signs of improvement. His care team at Children’s of Alabama called Cincinnati Children’s to discuss the possibility of a lung transplant.

“They reached out to us to see if we would want to consider assuming his care and if his lung injury would improve,” Hayes says. “His options here were either ECMO bridge to recovery or ECMO bridge to transplant.”

Once QT, as he likes to go by, arrived in Cincinnati, the End-stage Lung Failure team identified what was needed and modified his treatment plan. QT quickly started to improve despite all odds. After he was decannulated from ECMO and removed from the ventilator, he went back to Children’s of Alabama for inpatient recovery and rehabilitation.

Care transfers back to referring hospital

That return to the original point of care is one of the mainstays of this program. “Our goal is to partner with the institution where the patient is to help augment care there, or to transfer to us if necessary and return the patient to them,” Hayes says.

QT is now home and back to normal activities. Although he continues to have a tracheostomy tube in place, that will be removed soon. He is being cared for by a pediatric pulmonologist in Alabama, and recently checked in with Cincinnati Children’s for a virtual checkup. The providers in both states keep in contact with one another about QT’s ongoing needs.

Robert Richter, MD, PICU medical ECMO director with Children’s of Alabama, was grateful for the help in giving QT the best opportunity for an optimal outcome.

“Drs. Hayes and Cooper were instrumental in coordinating the safe transfer of our patient to Cincinnati on VV-ECMO in the midst of a pandemic, and the Children’s of Alabama medical team cannot thank the involved Cincinnati medical staff enough for going the extra mile to help a child in another state realize an incredible outcome,” Richter says. “We sincerely look forward to maintaining a close working relationship with Cincinnati Children’s.”

It is patients like these—who are declining and whose treatments are failing—that may benefit from the End-stage Lung Failure Program. “Our aim is to do our best to use our access to state-of-the-art, cutting-edge therapies to offer hope for children and their families,” Hayes says.

The team is open to consults for any pediatric or young adult patient with end-stage lung failure.

To learn more about this program, visit the End-stage Lung Failure Program online.