For children with end-stage lung disease, undergoing a lung transplant can be a life-altering and lifesaving procedure. Identifying which patients will benefit most from surgery and which may be able to improve on their own, however, is difficult. Making these decisions is a collaborative effort, says Don Hayes, Jr., MD, medical director for the Pediatric Lung Transplant Program at Cincinnati Children’s. Following this approach has led to resounding success for both patients and the program. “We have turned the lung transplant program survival around for patients at one year after surgery. Now, it’s 100%. Our three-year survival rate is above the national average,” Hayes says, referring to outcomes reported in the Scientific Registry of Transplant Recipients January 2022 report. “By bringing all of the patient units together, we’ve had success in bridging patients to recovery.”

Creating a Better Approach

Children facing a potential lung transplant live with other end-stage lung diseases, including bronchiolitis obliterans, cystic fibrosis, interstitial lung diseases, pulmonary hypertension and heart disease that affects the lungs. Bringing together a group of specialists, including David Morales, MD, executive co-director of the Heart Institute and director of cardiothoracic surgery, and other providers from pulmonary medicine and infectious disease, our multidisciplinary team helps pinpoint the best candidates for transplant.

“We’ve moved away from just broadly categorizing people as a potential transplant candidate,” Hayes says. “By approaching them as a lung failure patient, we’re trying to determine whether they’re going to survive with their lungs or require a transplant.”

Overall, though, Hayes credits a two-pronged approach for effectively revitalizing the lung transplant program. It all comes down to nurturing relationships. After arriving at Cincinnati Children’s, he says, he invested significant effort to strengthen collaborations and relationships within the hospital’s walls. In addition, he leveraged his existing referral base throughout the Midwest to connect patients with the program’s experts. Hayes says Cincinnati Children’s is actively sharing its extensive lung care resources with others.

“We’ve had continued growth of our referral programs, including with rare lung diseases and pulmonary hypertension,” he says. “We’re also bringing in more critically ill children with single lung failure who are not going to recover without a lung transplant.”

Accepting More Complicated Patients

Identifying and selecting lung transplant candidates is tricky, Hayes says. There’s no list of specific patient characteristics to tell providers a child will be able to tolerate and flourish after the procedure.

“If I knew the perfect way to choose a patient, I could fix all the questions around transplant,” he says. “To be frank, we don’t have enough organs to supply all the candidates who are waitlisted nationwide. The best we can do is to be good stewards of the program and use the organs we have appropriately.”

For Cincinnati Children’s, that means opening the program to children who have more complex conditions. Frequently, these children have difficulty accessing the high level of services they need. Unlike other transplant programs, however, Cincinnati Children’s has the resources and expertise required to consider some patients who are on extracorporeal membrane oxygenation (ECMO). The team evaluates each patient to determine whether Cincinnati Children’s can help them recover with their native lungs or to assist in performing a lung transplant. In addition, Hayes says, the lung transplant team can also accept patients with certain infections. Existing partnerships with providers in the Infectious Disease and the Cystic Fibrosis Team make these transplants possible.

Serving a Changing Patient Population

Over the past decade, though, the face of the pediatric lung transplant population has been changing. The advent of a new class of drugs for children with cystic fibrosis has delayed the need for a lung transplant for children into adulthood, Hayes says. Many patients can recover enough lung function to postpone the operation, effectively cutting transplant volumes by more than half nationwide. For that reason, the lung transplant program at Cincinnati Children’s is focusing on pediatric patients with other end-stage lung diseases with a particular focus on pulmonary hypertension. The number of children suffering from pulmonary hypertension is increasing, and the severity of their disease is worsening.

“Children with pulmonary hypertension are a patient population that is extraordinarily important to us at our center,” he says. “We have a large pulmonary hypertension program with internationally recognized experts in the field, so our colleagues serve as a referral center for the condition. Now, we’re enhancing our collaborations with the Pulmonary Hypertension Program at Cincinnati Children’s to provide the best comprehensive care for these patients nationally.”

For children on ECMO, providers at Cincinnati Children’s accelerate the rehabilitation process by waking these children so they can actively participate in physical and occupational therapy. Doing so also optimizes their nutrition by allowing them to eat normally. For children with single-organ lung failure, delays in instituting an optimal plan for recovery can lead to additional problems, Hayes says. This approach assists the team in determining who may recover with their native lungs and who will require a lung transplant. Ultimately, Hayes says, the end-stage lung failure and lung transplant programs at Cincinnati Children’s are unique among its peers.

“This is really the first lung failure/lung transplant comprehensive program,” he says. “We’re using our expertise and passion for caring for this patient population to focus on critically ill kids who are not recovering as expected on specialized respiratory support.”