A medical gray zone

Five-year-old Michael Sylvestre suffered from a rare disorder that seemed out of a horror movie. Every few days, he coughed up branch-shaped chunks — some longer than a finger — of a whitish substance with the consistency of string cheese.

Lymphatic fluid was leaking into his right lung. He struggled to breathe until a violent cough forced out a rubbery mold of his bronchial branches. Then he could freely draw air, until it happened again.

Doctors at the Children’s Hospital of Philadelphia had pioneered in 2013 the world’s first fix for a condition that can be fatal, called plastic bronchitis, using a medical-grade glue to plug the internal leaks.

Michael’s family came to CHOP in June 2022 expecting their son’s symptoms to improve through the care available at a top-ranked hospital that has built its reputation on such medical advances. A CHOP cardiologist led them through a consent form, which listed risks such as infection, bleeding, and allergic reaction, and offered assurances that Michael wouldn’t suffer serious harm. At the warning about “sudden death,” the family was told not a single child had died from this lymphatic procedure.

But that wasn’t true, The Inquirer found.

By then, at least two children had died at CHOP from post-procedure complications. Two others suffered strokes after glue traveled to their brains. Another two children developed severe gastrointestinal bleeding.

None of this stopped CHOP from describing its lymphatic procedures as “low risk” on its website at the time of Michael’s procedure.

CHOP touts its lymphatic program as the world’s best, saying it has performed nearly 1,300 procedures — more than anywhere else. Most children leave feeling better, and many no longer cough up rubbery chunks. Hospitals have sent children from nearly every state to CHOP for the procedure invented by its doctors.

An exclusive look into problems that were never publicly disclosed has emerged from The Inquirer’s reporting, including interviews with nine families whose children underwent lymphatic procedures at CHOP and a review of thousands of pages of court filings, including depositions, expert opinions, and medical records.

The doctors who pioneered the procedure at CHOP accused each other of “unjustifiable risks” and “quite unsafe” practices. Each described the other’s training as inadequate as the program grew and their partnership turned competitive.

CHOP’s program leaders learned from errors as they went. For checks and balances on their work, the doctors helped set up their own oversight committee, made up of hospital division chiefs.

For years, CHOP downplayed the risk of serious harm when getting families’ permission to perform the procedure on medically fragile children. Four families interviewed by The Inquirer said doctors glossed over potential risks, including death or stroke.

The program grew rapidly in a medical gray zone between experimental research and proven treatments — an area known in medicine as “rescue.” That means doctors aren’t fully confident in the procedure, but if they do nothing, the patient will likely suffer horribly or even die.

Most children with plastic bronchitis, like Michael Sylvestre, are at risk of suffocation, pneumonia, and death. Their medical histories are complex, with the lymphatic leaks resulting from prior surgeries to fix heart defects. The sickest of these children end up at CHOP, whose program has helped many improve their quality of life or buy time to later get a heart transplant.

» READ MORE: Listen to the heartbreaking phone call between CHOP doctors and the parents of a boy who died: ‘We are so, so sorry’

CHOP did not answer detailed questions from The Inquirer, nor grant repeated requests to interview its doctors. Instead, the hospital provided statements highlighting its commitment to safety and quality. Lymphatic procedures come with risks, “but often are the only remaining options for these children,” it read.

“We take these risks seriously, providing counsel to families, including a review of potential risks and complications,” the statement said. “These therapies are novel and as we learn more, we update our consenting process as well.”

The Sylvestres are among four families who say in lawsuits that CHOP’s lymphatic program cut corners, took avoidable risks, and operated without adequate hospital controls. The same Philadelphia lawyer represents all four in medical malpractice lawsuits filed in Philadelphia’s Court of Common Pleas.

When Michael came to CHOP from Arizona, his plastic bronchitis was already severe, but medical records show his lungs and heart were functioning well. He was singing and dancing in his hospital bed a day before the procedure.

The family returned home with his body in the plane’s cargo hold.

Doctors shouldn’t have a “license to experiment” without being more forthcoming with families about the dangers, said Michael’s grandfather, Michael Lovato, who was at CHOP throughout the procedure.

“These kids are going in as guinea pigs, so if they make it through, great,” he said.

“If not, ‘Well, I’m sorry?’”

CHOP’s Center for Lymphatic Disorders, now the largest and most active in the world, started about a decade ago when two Philadelphia doctors got to talking while playing recreational basketball.

Yoav Dori, a pediatric cardiologist at CHOP, was treating children who had surgeries to fix heart defects as babies and toddlers and later developed plastic bronchitis.

Fellow hoopster and doctor Maxim Itkin was intrigued. He worked next door at the Hospital of the University of Pennsylvania (HUP) as an interventional radiologist, using X-rays, MRIs, and CT scans to perform procedures with small incisions that are less invasive than open surgery.

Dori and Itkin hypothesized that leaking fluid from the lymphatic system — the body’s internal immune system — was causing plastic bronchitis in these children.

The fluid, called lymph, is made up of bacteria-fighting cells, proteins, fats, and electrolytes. In healthy people, it is channeled from tissues throughout the body into the lymphatic vessels and ultimately drains into a vein near the neck.

But in some heart-surgery patients, lymphatic fluid can flow the wrong way through branches surrounding the lungs, leaking into the bronchial tubes, where it hardens into gelatinous “casts.”

Born with an underdeveloped heart, the Texas boy had developed plastic bronchitis and was coughing up casts three to four times a day.

The CHOP procedure involved threading a catheter through the abdomen up to the lungs. Then the doctors planned to seal up leaks by inserting a coil and injecting glue to bind to the coil.

The procedure had never been performed on children with plastic bronchitis, but Itkin had used similar techniques on patients with other lymphatic conditions. They told the Finley family their odds of eliminating the leaks were 50-50.

The procedure worked. Jameson, now 17, did not cough up any worrisome casts for a decade; he’s now awaiting a heart transplant, his family said.

“They gave Jameson really about 10 years of good quality of life, which we don’t take for granted,” Jameson’s father, Todd Finley, said. “I tip my hat to CHOP.”

As word spread, CHOP began to receive patients with lymphatic disorders from nearly every state — from California to Connecticut — and as far away as Germany. The hospital’s research institute invested $6 million in the nascent program, court records show.

The doctors building the program at CHOP created an oversight committee, made up of division chiefs from CHOP and HUP, to “put checks and balances on what we did, to make sure that we’re not making mistakes,” Dori said in a 2022 court deposition.

When Dori and Itkin wanted to try something new, they first ran it by the oversight committee for approval. And when there were complications, they discussed what went wrong and how to prevent repeat missteps, Dori said.

Small changes to procedures, Dori said, didn’t go through the oversight committee. He would just do them.

CHOP declined to answer questions about program oversight, saying only that it has “dedicated safety teams to investigate adverse outcomes, develop corrective action plans, and analyze data across numerous safety and quality measures.”

CHOP’s Institutional Review Board is tasked with protecting the safety and rights of patients involved in research. Dori sought its approval for a research study to track children who underwent lymphatic procedures. In 2016, the board approved the study, which is ongoing.

Doctors had asked the IRB early on if they needed its permission and oversight prior to doing their first lymphatic procedures on children, according to a published research paper in which Dori is the lead author.

The board said no, citing as a reason that plastic bronchitis “is a potentially fatal illness without a known treatment, the benefits of performing the procedure would likely outweigh the risks.”

In health care, such innovation is a “wild, wild west” with few regulations, said Christopher Robertson, a health policy expert and associate dean at Boston University’s School of Law.

“Generally, the law and the ethics allows them to innovate without much oversight,” Robertson said. “We’re profoundly dependent on the doctor’s expertise.”

At CHOP, Dori and Itkin were soon trying procedures on children with different lymphatic disorders. Itkin taught Dori how to use the tools of interventional radiology to insert needles into lymph nodes, guide catheters to get at leaks, and mix and inject medical-grade glue.

“We were coming into a field that doesn’t exist,” Dori said in the court deposition.

“There was really nobody to turn to that would be a supervisor of this,” he added.

Inside CHOP’s procedure rooms, though most of the patients did well, complications started to mount, according to court records and a CHOP study.

A 15-year-old boy with plastic bronchitis suffered a stroke after an oil-based dye traveled to his brain.

Two other children, with a different lymphatic disorder, developed severe gastrointestinal bleeding. In both cases, doctors were experimenting with dye in hopes of seeing intestinal lymphatic leaks more clearly.

In October 2016, a glob of glue accidentally traveled to the brain of 7-year-old Caelen Gorman of Florida.

Neurosurgeons were rushed over from HUP and later told his mother that they had never been asked to try and extract glue from a brain, according to his mom, Katye Gorman. They tried to remove the glue, but were unable to retrieve bits that broke off and traveled deep into his brain, according to medical records and the boy’s mother.

Caelen now has tremors, and learning and behavioral difficulties that suggest permanent brain damage. His mother recently learned from Florida doctors that her son suffered a stroke. This was a potential risk flagged in 2016 by CHOP doctors, given the glue left in his brain, his medical records show.

Working in this medical frontier is fraught with risk; complications and poor outcomes are unavoidable. But the alternative is not to try.”

But his plastic bronchitis symptoms dramatically improved, which made it possible for Caelen, now 15, to have a successful heart transplant in his home state.

“CHOP saved his life,” Katye Gorman said. “But I think these guys are cowboys, and they’re willing to take risks.”

One adverse outcome is “too many,” CHOP said in a statement, noting the hospital’s commitment to advancing treatments for children with congenital heart disease.

“Working in this medical frontier is fraught with risk; complications and poor outcomes are unavoidable,” Matthew Gillespie, the medical director of a cardiac unit at CHOP, said in a statement. “But the alternative is not to try.”

By late 2016, about three years after the first procedure, Dori and Itkin had also become increasingly worried about risks the other was taking, court records show.

Shortly after glue got into Caelen’s brain, Itkin warned CHOP and HUP leadership about what he viewed as Dori’s lack of training and recklessness. And Dori said he was fielding complaints about Itkin’s deficiencies from other CHOP pediatric specialists.

Dori and Itkin were now competitors, vying to lead the nation’s first lymphatic center. No longer trying to complement each other’s expertise, they cited their differences as liabilities.

Dori’s “interventional technique is sloppy and he often takes unjustifiable risks and takes dangerous technical shortcuts,” Itkin wrote in a memo sent to hospital leaders in February 2017, pitching himself to lead the program.

He described one procedure in which Dori had drained fluid around a child’s heart without consulting the cardiology team or telling the parents and getting their consent.

“[Dori] is zealous to achieve technical success at any price in each procedure, and doesn’t know when to stop even when the chances of success are miniscule,” Itkin’s memo said.

Dori had similar concerns about his partner’s lack of knowledge in pediatric cardiology.

“Dr. Itkin is not a pediatrician. He doesn’t know anything about congenital heart disease or actually how to take care of children,” Dori said in a later deposition. “It actually became quite unsafe to take care of patients with some of the things that he was doing.”

Itkin stopped doing procedures at CHOP by 2018. When contacted by a reporter, he declined to comment. The contract, or “leased physician agreement,” that Itkin had signed with CHOP included a confidentiality provision limiting him from publicly discussing its lymphatic program, court records show.

CHOP did not provide an answer to The Inquirer’s question asking how hospital administrators addressed the accusations. Dori did not respond to The Inquirer’s request for comment and CHOP declined requests to interview him, citing active litigation.

Itkin is now director of the Penn Center for Lymphatic Disorders. He does the same kind of lymphatic procedures on adults at HUP and on kids at Nemours Children’s Hospital, where he helped establish a separate program. A HUP spokesperson declined comment.

Nemours has no “safety concerns” about Itkin, who has been a member of its medical staff since 2018 and is not being sued, spokesperson Shelley Meadowcroft said in a statement.

“We have had no reported safety concerns, or lawsuits filed against him,” she said, stressing the hospital’s commitment to “protecting the health, safety, and well-being of those in our care.”

Dori became CHOP’s first director of pediatric lymphatic intervention and research and has since trained doctors worldwide to do the procedures. He also started at CHOP the nation’s first training fellowship for doctors who want to specialize in interventional lymphatic procedures.

When Michelle Leach’s daughter was at CHOP with a severe lymphatic leak in 2019, Dori offered a lifeline, she said.

“The man who invented these procedures was going to be doing it on my daughter, like what more could I ask for?” Leach said.

After the procedure, Leach’s daughter, Blair, now 5, was well enough to finally leave CHOP and return to the family’s Chester County home.

“It really was the answer to her challenge at that time,” Leach said. “It saved her life.”

Two months after hospital leaders received Itkin’s memo warning of problems, a 3-year-old boy from Delaware with plastic bronchitis suffered a devastating stroke at CHOP. During the March 2017 procedure, Dori failed to control the glue and it traveled to the boy’s brain.

The boy, Jase Lyons, went into cardiac arrest and had to be revived. Dori did the procedure without a specialist trained in interventional radiology, medical records and court documents show.

Jase was born with a heart defect that required three reconstructive surgeries and left a small hole between his heart and the largest vein in his body. Doctors intentionally leave a hole in these cases to help regulate blood flow.

This hole is also a well-known challenge to lymphatic interventions. In talks at medical seminars, Dori has repeatedly cautioned peers to temporarily block the hole with a balloon. Otherwise, glue could travel through the hole and get to the brain.

But Dori did not block the hole in Jase’s case. And the glue intended to plug a lymphatic leak instead flowed freely into his bloodstream.

His care was later reviewed by outside experts hired by Jase’s parents, Raymond and Shyla Lyons, who sued CHOP and Dori for medical malpractice. Three medical experts concluded Dori’s decision to not temporarily close the hole increased Jase’s risk of stroke.

“Extremely dangerous,” “the worst technique possible in a child,” and “unwarranted risks,” Ravi Srinivasa, an interventional radiologist at UCLA Health, wrote in his August 2023 report.

The amount of glue that got loose, Srinivasa noted, “is astounding.”

Srinivasa said he could tell from the radiologic images that Dori struggled to do techniques that a specialized interventional radiologist is trained to do.

“Had Dr. Dori simply asked for help from a trained interventional radiologist who is trained to use microcatheters in tiny vessels, many of the issues that arose in this case would have been avoided,” Srinivasa wrote.

CHOP provided to The Inquirer two reports from experts that it hired to rebut Srinivasa’s opinion. Their experts noted that doctors with Dori’s training often perform procedures independent of interventional radiologists, who also can encounter problems and be unsuccessful during these complex procedures. “Dr. Dori has more experience with these interventions than any physician in the world,” wrote Daniel Levi, a cardiologist at UCLA’s Mattel Children’s Hospital, which modeled its lymphatic program after CHOP’s.

CHOP settled the Lyons case for an undisclosed amount this past spring.

Dori said in his deposition that Jase’s medical history had some unique challenges, and he worried that temporarily blocking the hole might cause a dangerous blood clot. Dori also said he completed training that allows him to do interventional procedures on his own.

He denied doing “anything inappropriate,” but said he felt terrible about the outcome and understood the parents’ anger at him and at the hospital. “I am the reason why their kid had a stroke.”

Jase, now 11, is blind, communicates like a preschooler, and requires a wheelchair to get around. He is “neurologically devastated,” according to a September 2023 report from a Louisiana neurologist hired by his parents.

Jase’s mother, Shyla Lyons, did not return phone calls from The Inquirer. In a 2017 Facebook post on a private group for Philadelphia parents of children with heart conditions, she said she couldn’t “in good conscience” recommend the procedure for other kids:

“Knowing what we know now, and how dangerous the procedure truly was, even without the complications he had, I would have never put my child through this if I’d been warned ahead of time,” she wrote in the post shared by another group member with a reporter.

CHOP’s current webpage about its lymphatic program and the procedure says nothing about potential risks. Through late 2022, it described the procedures as “low risk.”

By early 2023, CHOP had updated the webpage to remove the section in which it discussed risks and potential complications, according to an Inquirer search of an Internet library of archived websites.

With the update, CHOP removed all references to risk and the section in which the low-risk language had appeared.

The website’s “mention of the procedure being low risk was not intended to be misleading,” CHOP said in a statement.

“The procedure has a high success rate for lymphatics abnormalities that, before this procedure, had a high death rate,” CHOP said. “However, we constantly update content to reflect the most up-to-date information.”

CHOP has data on patient outcomes from its lymphatic procedures registry, but it does not publish any on its webpage.

In court records, CHOP disclosed 11 deaths in the 120 children who underwent lymphatic procedures at the hospital from August 2013 through March 2017. Six of the children suffered strokes. The deaths and strokes occurred post-procedure at the hospital or within two weeks of discharge.

In conversations with parents, CHOP doctors minimized potential harm, four families said.

The father of the Texas boy — the very first child to have the procedure in 2013 — said the reason he consented to the procedure was because Dori and Itkin had told him there was little to no risk to his son.

“No one at any point mentioned the risks to us,” another parent told The Inquirer. That parent, Meaghan Devine, of Long Island, said she decided against the procedure for her son in 2017 after reading Shyla Lyons’ Facebook post. Her son died from his heart condition nearly three years later.

In the case involving Jase Lyons, a nurse glossed over the risks when she reviewed the consent form with Jase’s mother, Shyla Lyons, the family’s lawsuit said. The one-page consent form that Jase’s mother signed lists “stroke, sudden death” near the end of 18 potential risks.

Medical experts hired by the Lyons described the alleged lack of informed consent as deeply troubling.

“The entire consent process in this case was insufficient,” John Thomson, an interventional pediatric cardiologist at Johns Hopkins Medicine, wrote. “When you are dealing with new, novel, or particularly complex interventional procedures, the physician who will do the procedure must make the time to explain the risks.”

Dori disputed the concern in his deposition, saying the signed consent form is proof Shyla Lyons knew her son could potentially suffer a stroke.

“The documentation about the conversation with the parents about risks of the procedure is the consent form. That’s where the risks are,” Dori said.

CHOP declined to discuss the case, but provided two reports from experts who described the hospital’s communication as excellent. They highlighted a deposition given by Jase’s father, Raymond Lyons, who said he recalled Dori discussing risks, including stroke.

But his wife said Dori downplayed the stroke risk, court records show.

In a statement, CHOP said the consent process is not just a form but “an ongoing conversation” that often starts before families come to the hospital for a lymphatic procedure.

CHOP and its doctors had an obligation to go above and beyond in making sure parents fully understood the risks versus benefits, four experts told The Inquirer.

“Doctors on the cutting edge want to push the envelope,” said Arthur Caplan, who created the Center for Bioethics at the University of Pennsylvania.

“The way you make a reputation for yourself at a prestigious institution like CHOP is by saying, ‘I improve. I make breakthroughs. I do better than what currently is available,’” said Caplan, now a professor at New York University. “But that’s why you have to have a system that protects against innovative enthusiasm.”

The doctor leading CHOP’s lymphatic program was candid about risks and past mistakes when speaking with peers, according to Sanjay Sinha, an interventional pediatric cardiologist from California who traveled to Philadelphia to learn how to do lymphatic interventions.

Sinha recalled meeting with Dori in 2015 in CHOP’s cafeteria.

“We sit down and he’s like, ‘Listen, I’m going to sit here and I’m going to tell you every mistake we made. I’m going to tell you what happened. Why we thought this would work. Why it didn’t work,’” Sinha said.

Dori wanted other doctors to avoid his missteps, said Sinha, who helped launch the lymphatic program at UCLA Mattel Children’s Hospital.

Parent Cecile Michaelis has been raising money for UCLA’s lymphatic program since her 13-year-old daughter, Noah, died at CHOP in 2017 after experiencing complications from a lymphatic procedure there.

She said she knew the risks going in, but there was no other choice. She believes Dori and other doctors learned from her daughter’s death.

“She gave them the experience that was needed to do better work,” Michaelis said. “As much as it hurts to say that — it’s beneficial for kids now, and I’m grateful for that.”

Michael Sylvestre’s parents thought they were going to CHOP for a low-risk procedure that promised to improve their 5-year-old’s quality of life.

The boy and his mother boarded a medical transport from Phoenix Children’s Hospital to Philadelphia in late June 2022. Phoenix had admitted him because a cast had clogged his airway, and he needed supplemental oxygen. He coughed it up, and his lungs were clear prior to boarding the airplane.

CHOP cardiologist Christopher L. Smith, who began training under Dori in 2017 and was the first doctor to go through CHOP’s new fellowship in interventional lymphatic procedures, went over the consent form with Michael’s mother and his grandfather.

Michael’s grandfather, who joined the boy and his mother at CHOP, asked Smith directly: Has any kid died from the procedure? According to the grandfather, Michael Lovato, Smith replied, “Zero.”

“This was a nothing burger, as he put it, and he’s the best at doing it — him and the guy who taught him,” Lovato recalled, meaning Dori.

On June 27, 2022, at about 7:30 a.m., Michael’s father, who was back in Arizona with Michael’s younger brother, called to tell his son he’ll see him soon. “I love you,” the boy told him. The medical team wheeled Michael to the operating room. The anesthesiologist described him as “alert, playful.”

Sometime in the afternoon, a nurse came out to tell the family Smith was weighing whether to stop the procedure. She didn’t say why, according to Hollie Sylvestre.

Inside the procedure room, Smith struggled to find the leak in Michael’s right lung. Once found, he had trouble reaching the leak. Then “a small drop of glue” entered a vein by mistake, Smith’s medical notes show.

Smith continued the procedure.

At about 7:30 p.m., Smith emerged and asked Hollie Sylvestre to quickly sign a consent form to insert a tube into Michael’s chest to help drain fluids.

By 10 p.m., Hollie Sylvestre was desperate to see her son. “I’m done waiting,” she told her father, crying.

She barged into the cardiac ICU. Room by room, she looked for Michael. Finally, she found him. She could see Smith standing over him through the open door. He came out.

“I’m sorry. I’m sorry. I’m sorry,” he said, according to her recollection of Smith’s words.

Hollie Sylvestre read the monitors hooked up to her son. His blood pressure and oxygen were frighteningly low. His heart rate dropped. His body was bloated with fluid, she recalled.

She asked the cardiac ICU doctor what he thought. “I’m worried,” he said.

She called her husband and told him to get on the next flight.

“I knew it was to say goodbye to Michael,” he said.

He rushed into his son’s room at about 7:10 a.m., minutes before Michael died.

» READ MORE: In a phone call with the CHOP doctor who performed a procedure on her son, Michael Sylvestre’s mother told him: ‘I don’t even know how you could sleep that night.’

In a letter to the Sylvestres, Smith described Michael’s death as an “unanticipated and unexpected loss,” noting that CHOP would conduct an internal review.

But the boy’s death certificate, filled out by a CHOP cardiologist, says nothing about the procedure. It lists his immediate cause of death as his underlying heart condition and says the manner of death was “natural.”

The cause of death should have been clearly identified as a therapeutic complication from a lymphatic procedure, with Michael’s heart defect and plastic bronchitis listed as underlying causes, three pathology experts told The Inquirer.

About two weeks after their son died, Hollie and Michael Sylvestre spoke by phone with Smith and the cardiac ICU doctor, David Hehir, who was on duty that night. The couple asked if they could record it; the doctors agreed. The audiotape is part of their public court filings.

Michael Sylvestre asked Smith why he told his wife no child had died from the procedure. Smith’s answer stunned him: He didn’t count children who died more than 24 hours later as a procedure-related death.

“We have not had anybody,” Smith told the couple during the recorded call, “who had died in the procedure itself, previously. We’ve had kids who’ve been sick who, in the next few days, following the procedure have died, um, for various reasons.”

“He is my first patient who has died within 24 hours,” Smith said.

Hollie Sylvestre said she doesn’t understand that logic. “To us, it counts, but apparently to them, it doesn’t count,” she later told The Inquirer.

CHOP did not respond to a reporter’s question about whether it’s hospital policy to only count deaths that occur within 24 hours as procedure-related. CHOP does note deaths beyond that window in its research. Smith did not respond to The Inquirer’s request for comment. CHOP declined a request to interview Smith, citing pending litigation.

During the hour-long call, the couple asked Smith why he didn’t stop the procedure.

Smith said he wasn’t “getting any warning signs that we should abort.” Both Smith and the ICU doctor said Michael was very sick when he arrived at CHOP and his heart condition, coupled with the “stress” of the procedure, factored into why he died.

Smith apologized and said he hoped to learn from Michael’s death.

“We strive to, obviously, provide the best care that we can so we can prevent things like this,” Smith told the couple. “But when they do, it really helps us look hard at what our current sort of standard practices are, and they may not be perfect. And I think in this case, they, they failed.”

» READ MORE: Listen to more from the Sylvestres' phone call.

The Sylvestres said they don’t feel their questions about what went wrong were answered. Last year, they filed a medical malpractice lawsuit accusing Smith and CHOP of insufficient training and skill, failing to stop the procedure before it was too late, and a consent process “that was at best incorrect and at worst purposely misleading.”

“CHOP needs to oversee how procedures are being done, and the risk involved, and they need to hold physicians accountable,” said Theresa Blanco, the Philadelphia lawyer for the Sylvestres who represents three other families in civil lawsuits against CHOP’s lymphatic program.

In response, a CHOP lawyer wrote in a court filing it was the doctor’s responsibility — not CHOP’s — to obtain informed consent. That’s because doctors — not the hospital — are in the best position to know the risk to their patient, the lawyer noted, citing state law.

Michael Sylvestre said CHOP should know what its doctors tell parents.

“At the end of the day, our son passed away because of CHOP’s employment of Dr. Smith and now they want to say, ‘Well, it’s not our job to do consent?’” Michael Sylvestre said.

In a recent interview, Hollie Sylvestre said she doesn’t want to close down the lymphatic program; she wants to make it safer for other kids.

“If we could have gotten rid of Michael’s leak, then he would have been doing great and I want that for other kids,” she said.

Inquirer Staff Writer Dylan Purcell contributed to this article.