Cystic fibrosis therapies significantly reduce the need for pediatric lung transplants

Pediatric lung transplant specialist Christian Benden, MD, described the future for children who need lung transplants: fewer operations overall, but more complex patients and mounting challenges for the teams who care for them. He addressed the 46th Annual Meeting and Scientific Sessions of the International Society for Heart and Lung Transplantation (ISHLT) today in Toronto.

Worldwide, fewer than 100 pediatric lung transplants are performed in patients under 18 each year, compared with nearly 5,000 adult procedures. At his own institution, Boston Children's Hospital, just two pediatric lung transplants were performed last year, a volume typical of the half dozen programs in the United States.

"Pediatric lung transplantation has always been a niche because the numbers are very small," said Dr. Benden, past president of ISHLT.

Cystic fibrosis: A success story changing the field

Historically, children with cystic fibrosis (CF)–related end-stage lung disease accounted for up to half of pediatric lung transplants in the United States and about two-thirds in Europe and Australia. That has changed dramatically with the advent of highly effective therapies that can correct the underlying protein defect in many patients with CF.

Children as young as two years of age, and in some cases, pregnant women with CF, are being treated in utero to protect their unborn children's lungs.

"CF will largely disappear as an indication for lung transplant in children," Dr. Benden told the audience at ISHLT2026.

Fewer cases, sicker children

Remaining transplant patients frequently have multi‑system disease and severe cardiopulmonary compromise. The last three pediatric lung transplants at Boston Children's were all supported on ECMO (extracorporeal membrane oxygenation) prior to transplant, a level of support once considered extraordinary.

"This is becoming routine practice," he said.

One of our recent transplant recipients was an 11-pound infant, which underscores the technical and physiological challenges our team faces."

Christian Benden, International Society for Heart and Lung Transplantation

He said such complexity demands highly specialized, multidisciplinary teams and close collaboration with other pediatric solid organ transplant programs (heart, liver, kidney) around immunosuppression strategies and infection management.

Training the next generation

Given the low procedure volumes at most centers, training future generations of surgeons and allied health professionals is a pressing issue for pediatric lung transplant programs.

"Pediatric lung transplant programs cannot operate in isolation," Dr. Benden said. "They should be tightly linked to high‑volume adult lung transplant centers and to other pediatric transplant services to ensure adequate clinical exposure and shared learning."

Experts at the symposium also discussed the optimal location for pediatric lung transplantation programs:

  • in stand‑alone children's hospitals, which are optimized for pediatric care but may have very small transplant volumes, or
  • embedded within or closely linked to adult lung transplant centers, which can offer high procedural volume and broader experience.

Dr. Benden pointed to examples such as Toronto, Hanover (Germany), and Melbourne, where pediatric programs benefit directly from large, established adult lung transplant services. However, he stopped short of advocating for a one-size-fits-all model.

"My take‑home message is to assess your local resources, and then find the best way to maintain training for current staff and future leaders," he said. "There won't be a single solution that fits every center around the world."

Although fewer children require lung transplantation; the procedure remains critically needed

The bottom line, said Dr. Benden, is that pediatric lung transplantation will remain necessary but rare, reserved for the most complex cases in an era in which medical therapies are increasingly preventing children from reaching end‑stage lung disease.

"The question is no longer only 'Can we do the transplant?'" he concluded. "It's 'How do we build and sustain teams with the right skills, given that these children are few, but their needs are enormous?'"

The annual meeting and scientific sessions of the ISHLT are being held from 22-25 April at the Metro Toronto Convention Centre in Toronto, ON, Canada.

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