In the world of medicine, groundbreaking procedures offer hope for those with dire conditions. Yet, such innovation must always be accompanied by rigorous oversight and transparency to the patients about the risks, both known and unknown. The Philadelphia Inquirer's investigation of the Children’s Hospital of Philadelphia (CHOP) and its pioneering lymphatic procedure for plastic bronchitis tragically reveals what happens when these safeguards fail.
What is Plastic Bronchitis?
Plastic bronchitis is a rare and potentially life threatening condition characterized by the formation of thick, rubbery mucous in the airways. Patients with this condition often have a persistent cough that brings up rubbery or waxy-looking mucous plugs, which are referred to as casts. The plugs can be yellow, green, or white and may vary in size, and can cause severe breathing difficulties because they block the airway. Often, patients with plastic bronchitis have other serious medical conditions, including congenital heart disease, asthma, or cystic fibrosis, and the condition can be aggravated by respiratory infections or viral illnesses. This means patients with a diagnosis of plastic bronchitis are often in very ill health.
The diagnosis is made through chest X-ray and/or CT scan to identify abnormalities in the lungs, such as mucous buildup. Thereafter, patients often undergo a bronchoscopy, where a small thin tube is inserted in the airways to look for further abnormalities and remove any obstructing mucous casts. Patients traditionally could also undergo postural drainage, chest physiotherapy, or chest wall oscillation to help clear mucous, and some physicians prescribe bronchodilators or corticosteroids to help provide relief to patients.
A Ground Breaking Treatment?
In recent years, CHOP developed and began administering a new treatment, known as lymphatic embolization, which it heralded as a lifeline to these critically ill patients. Physicians used a medical-grade glue to seal leaks or abnormalities in the lymphatic system in an attempt to stop the flow of mucous to the airways. This experimental treatment promised relief for children whose lungs were filled with suffocating casts of lymphatic fluid.
While lymphatic embolization was a seemingly remarkable cure for patients with plastic bronchitis, there were huge downsides. Between 2013 and 2017, CHOP conducted 120 procedures. Of those 120 procedures, 11 children died and others suffered strokes or other catastrophic complications, including the glue migrating to other areas of the body. Families report consenting to these procedures because they were told they were low-risk—a narrative contradicted by The Philadelphia Inquirer’s recent reporting on the outcomes and CHOP’s internal reports.
A Lack of Transparency
According to the Inquirer, CHOP's internal culture and lack of external accountability exacerbated the issue. Informed consent forms, designed to educate parents and patients about the risks of the experimental procedure, glossed over severe complications like strokes or death. Families were often reassured that no children had died from the procedure—a statement that disregarded cases where deaths occurred shortly after the intervention. This misleading communication left families unable to make truly informed decisions about their children's care.
Doctors at CHOP admitted to learning as they went, with internal oversight committees created only after the program expanded. While innovation in a “medical gray zone” can be justified when lives are at stake, the absence of rigorous checks and balances turned patients into unwitting participants in high-stakes experimentation, without their knowledge or consent.
A Systemic Problem
The lack of accountability extended beyond individual practitioners. CHOP relied on internal committees and the discretion of its physicians to assess the risks of the procedure. As the program grew, infighting among doctors over techniques and leadership distracted from patient safety. Accusations of unsafe practices and technical shortcuts highlighted the dangers of insufficient oversight.
Moreover, the hospital's own webpage continued to describe the procedure as “low-risk” until late 2022, well after complications and fatalities had occurred. This failure to update public information reflects a troubling disregard for transparency.
Lessons in Accountability
The stories of children like Michael Sylvestre, who died hours after undergoing the procedure, underscore the devastating impact of CHOP's missteps. Michael's family was assured of the procedure’s safety, only to endure the unimaginable loss of their child. The hospital’s internal review cited “unanticipated and unexpected” outcomes, yet the facts tell a different story.
CHOP's response to litigation—that individual doctors, not the hospital, bore responsibility for informed consent—highlights the systemic gaps in accountability. The hospital's leadership should have ensured rigorous training, clear communication, and robust oversight from the outset.
Moving Forward
I have personally represented numerous patients of other hospital systems who suffered catastrophic, life altering injuries after undergoing new, allegedly groundbreaking procedures that they were not properly warned about. Having seen firsthand the damage these new techniques can cause, I urge all hospital systems, including CHOP, to prioritize safety. Medicine can and should be growing every day, but patients need to understand when a new procedure has risks, what those risks are, and if the risks are still unknown. People turn to hospitals for surgical intervention in their most vulnerable moments. That trust must never be betrayed by a lack of oversight or a culture that prioritizes innovation over safety.
To ready the full article in The Philadelphia Inquirer, click here.
