Johns Hopkins Promised to Elevate All Children’s Heart Institute. Then Patients Started to Die at an Alarming Rate

Rosana Escamilila wipes her daughter Alexcia's face after brushing her teeth in her bedroom on Sept. 6, 2018 in St. Petersburg, Fla. Alexcia was born with hypoplastic left heart syndrome and had three surgeries at John Hopkins All Children's Hospital in St. Petersburg. During the third surgery, Alexcia suffered from a stroke that left her unable to move, communicate and feed herself. (Eve Edelheit/Tampa Bay Times/TNS)

December 10, 2018

By Kathleen McGrory and Neil Bedi

TAMPA, Fla. — Sandra Vazquez paced the heart unit at Johns Hopkins All Children’s Hospital.

Her 5-month-old son, Sebastian Vixtha, lay unconscious in his hospital crib, breathing faintly through a tube. Two surgeries to fix his heart had failed, even the one that was supposed to be straightforward.

Vazquez saw another mom in the room next door crying. Her baby was also in bad shape.

Down the hall, 4-month-old Leslie Lugo had developed a serious infection in the surgical incision that snaked down her chest. Her parents argued with the doctors. They didn’t believe the hospital room had been kept sterile.

By the end of the week, all three babies would die.

The string of deaths in mid-2017 was unprecedented. Nurses sobbed in their cars. The head of cardiovascular intensive care sent an email urging his staff to take care of themselves and each other.

The internationally renowned Johns Hopkins had taken over All Children’s six years earlier and vowed to transform its heart surgery unit into one of the nation’s best.

Instead, the program got worse and worse until children were dying at a stunning rate, a Tampa Bay Times investigation has found.

Nearly 1 in 10 patients died last year. The mortality rate, suddenly the highest in Florida, had tripled since 2015.

Other children suffered life-changing injuries. Jean Kariel Viera Maldonado had a heart transplant at All Children’s in March 2017. Soon after, the stitching connecting the 5-year-old’s new heart to his body broke, and he had a massive stroke. Today, he can no longer walk, speak or feed himself. His parents care for him full time.

Times reporters spent a year examining the All Children’s Heart Institute — a small, but important division of the larger hospital devoted to caring for children born with heart defects.

They compared Florida’s 10 pediatric heart surgery programs by analyzing a state database of 27 million hospital admissions spanning a decade. Then they reviewed thousands of pages of medical reports, interviewed current and former hospital workers, spoke with top health care safety experts and tracked down families across Central Florida coping with catastrophic outcomes.

They discovered a program beset with problems that were whispered about in heart surgery circles but hidden from the public.

Among the findings:

— All Children’s surgeons made serious mistakes, and their procedures went wrong in unusual ways. They lost needles in at least two infants’ chests. Sutures burst. Infections mounted. Patches designed to cover holes in tiny hearts failed.

— Johns Hopkins’ handpicked administrators disregarded safety concerns the program’s staff had raised as early as 2015. It wasn’t until early 2017 that All Children’s stopped performing the most complex procedures. And it wasn’t until late that year that it pulled one of its main surgeons from the operating room.

— Even after the hospital stopped the most complex procedures, children continued to suffer. A doctor told Cash Beni-King’s parents his operation would be easy. His mother and father imagined him growing up, playing football. Instead multiple surgeries failed, and he died.

— In just a year and a half, at least 11 patients died after operations by the hospital’s two principal heart surgeons. The 2017 death rate was the highest any Florida pediatric heart program had seen in the last decade.

— Parents were kept in the dark about the institute’s troubles, including some that affected their children’s care. Leslie Lugo’s family didn’t know their daughter caught pneumonia in the hospital until they read her autopsy report. The parents of another child didn’t learn a surgical needle was left inside their baby until after she was sent home.

The Times presented its findings to hospital leaders in a series of memos in November. They declined interview requests and did not make the institute’s doctors available to comment.

In a statement, All Children’s did not dispute the Times’ reporting. The hospital said it halted all pediatric heart surgeries in October and is conducting a review of the program.

“Johns Hopkins All Children’s Hospital is defined by our commitment to patient safety and providing the highest quality care possible to the children and families we serve,” the hospital wrote. “An important part of that commitment is a willingness to learn.”

All Children’s isn’t the first hospital to struggle with pediatric heart surgeries. Several heart programs, including one at St. Mary’s Medical Center in West Palm Beach, have shut down after reports of high mortality rates.

Most pediatric heart surgeries involve stopping a child’s heart and operating in a space no larger than a walnut shell. But advances in science and technology have made them strikingly safe. In Florida, the survival rate for children who have surgery to correct a heart defect is now 97 percent, the Times found.

All Children’s had earned a reputation as a community treasure that parents could trust to guide them through the terrifying experience of having a seriously ill child. Under Johns Hopkins, everyone assumed it would only get better.

“You hear Johns Hopkins, there’s a sense of prestige,” said Rosana Escamilla, whose daughter Alexcia suffered a stroke after heart surgery in 2016. “You think your child is in the best hands.”

Instead, operations that surgeons described as low-risk began failing.

“Somebody has to do something,” Sandra Vazquez remembers one of the other mothers telling her in a quiet corner of the unit, “because they are killing our children.”

In interviews in April and May, All Children’s CEO Dr. Jonathan Ellen told the Times that the Heart Institute had its “challenges” under control. It had slowed surgeries to the lowest level possible without shutting down.

“We’ve already self-policed our way out,” Ellen said, noting that the hospital had been performing only low-complexity heart operations for much of 2017.

It was a tacit acknowledgment that All Children’s hadn’t been able to perform the hardest heart procedures.

But the hospital couldn’t handle the less-complicated cases either, records and interviews show.

———

All Children’s Hospital opened in St. Petersburg in 1926 as the American Legion Hospital for Crippled Children. Over the decades, it had grown into a profitable children’s hospital, locally run and independent.

But members of its board had bigger ambitions. They wanted a partner to raise the hospital’s profile.

In 2011, they effectively gave the hospital to the Baltimore-based Johns Hopkins, which was in the midst of expanding into a $6 billion global health system. All Children’s would be its sixth hospital.

Johns Hopkins is considered the birthplace of modern American medicine. At the time, its flagship hospital had held the top spot on U.S. News & World Report’s rankings for 21 straight years.

By the end of 2012, two longtime Hopkins faculty members were appointed to key roles in St. Petersburg.

Ellen, the director of pediatrics at the Johns Hopkins Bayview Medical Center in Baltimore, replaced the hospital’s CEO. And Dr. Paul Colombani, the director of pediatric surgery at the Johns Hopkins Children’s Center, became chief of pediatric surgery.

The new leaders took special interest in the All Children’s heart surgery program, already one of the best in the state, but not among the ranks of the country’s elite.

The goal was to build a “top-flight, excellent program that could provide unique care for children,” Ellen told the Times in April.

The hospital’s heart surgeons were already performing about 200 procedures annually.

Dr. James Quintessenza, the chief of pediatric heart surgery, took the most cases, including many of the hardest ones. He had consistently good results.

Dr. Jeffrey Jacobs performed surgeries, too, but was a leader outside the operating room. He edited academic journals, spoke at conferences around the world and sat on committees devoted to improving safety.

A third surgeon, Dr. Paul Chai, operated at All Children’s only occasionally.

In 2013, Chai left for a job in New York. The hospital’s new leaders replaced him with Dr. Tom Karl, then 65, who had spent the previous six years practicing at a children’s hospital in Australia.

Karl had worked at some of the nation’s best pediatric heart surgery programs and published more than 100 peer-reviewed papers. But in 2008, the University of California, San Francisco had suspended his clinical privileges amid allegations he “disrupted patient care and educational activities,” he later told the Florida Board of Medicine. He said internal politics were to blame.

After Karl arrived in St. Petersburg, the hospital’s administration made a consequential change. For years, All Children’s cardiologists sent their most complicated cases to Quintessenza for surgery. Now all cases were to be distributed equally among Quintessenza, Karl and Jacobs.

As Ellen continued to fold All Children’s into Johns Hopkins, relationships with teams of private-practice cardiologists and critical care doctors who had played key roles in the unit began to fall away. Johns Hopkins preferred to use its own employees.

“Disrupting a chemistry in that program was what led to the problems that they have today,” said Dr. Al Saltiel, who was the president of the critical care group. “You can’t replace the entire team at the same time.”

The changes troubled Quintessenza. After disagreements with Colombani, he was demoted, then pushed out of the program in June 2016. He had been at the hospital for almost three decades.

By the end of the year, Quintessenza was named chief of pediatric cardiothoracic surgery at Kentucky Children’s Hospital. He declined to comment.

Colombani referred questions to an All Children’s spokeswoman.

Midway through 2017, All Children’s replaced Quintessenza with a young heart surgeon, Dr. Nhue Lap Do, straight out of fellowships at the Johns Hopkins Hospital and the Children’s Hospital of Philadelphia.

Karl and Jacobs would handle all of the hardest cases.

———

Medical professionals noticed problems with surgeries performed by Karl and Jacobs as early as 2015.

Their patients were returning to the operating room to deal with unforeseen complications, six current and former employees told the Times.

Parents who had chosen the program for its strong reputation began having confounding experiences.

Madeline Hope Rebori was born with a complex heart condition in June 2015. Karl had already met her parents, who recall him saying the condition could be repaired with surgery. But after Madeline arrived, a different All Children’s doctor told them nothing could save her, they said.

His instructions to the family: “Take her home and love her.”

It is not clear who made the decision. But Brian Rebori was stunned. He asked to speak with Karl. The hospital would not make the surgeon available, he said.

The father found a surgeon at Stanford University Medical Center who agreed to review Madeline’s records. In a letter, the surgeon acknowledged that her heart condition was an unusual variant of a defect called Tetralogy of Fallot. But his team had seen dozens like it and had repaired “a great majority” surgically, he said.

All Children’s later conceded that a procedure could be done, medical records show. Madeline’s parents took her to a hospital in Cincinnati, where she had life-saving surgery that August. She turned 3 this year.

“I went from planning a funeral to planning a life,” Brian Rebori said.

Surgical intervention is almost always recommended for babies with Madeline’s condition, even if the first step is to improve the baby’s chance of survival, said Dr. Michael Monaco, a pediatric cardiologist at Morgan Stanley Children’s Hospital in New York.

Back at the Heart Institute, things got worse after Quintessenza left in June 2016. With Karl and Jacobs as the only surgeons, the program experienced its highest six-month mortality rate in eight years, the Times analysis shows. At least four children died.

Karl and Jacobs each declined to comment when reached by Times reporters. They referred questions to the hospital and did not respond to emails outlining the Times’ findings. The emails did not bounce back.

In one 2016 case, which the Times first reported in April, Karl left a surgical needle in the aorta of newborn Katelynn Whipple. Other physicians knew it was there. Nonetheless, Katelynn was discharged with the needle in her body. It was removed three weeks later during an unrelated surgery at St. Joseph’s Children’s Hospital in Tampa, records show.

Leaving a surgical needle inside a patient is virtually always a serious, preventable mistake. It happened two times that year in the Heart Institute, All Children’s acknowledged in April.

In June 2016, Jacobs and Karl operated on 3-year-old Alexcia Escamilla.

Alexcia had been born with a heart condition requiring three surgeries. She had already undergone one of the most challenging procedures in pediatric open-heart surgery as a newborn, performed by Quintessenza. About one in five patients die.

She survived it, and a second surgery by Quintessenza.

Alexcia grew into a happy toddler who danced around the house and chased children at parties. She played with dinosaurs and trains, never dolls. She preferred her hair in a side ponytail. She couldn’t wait for the bus that took her to preschool. Some afternoons, when it took her home, she stood firmly on the top step, refusing to climb down.

The final surgery was supposed to be much less risky than the first. The chance of complications — bleeding, infection, stroke, major organ system injury, death — was in the 2 percent to 3 percent range, according to her medical records.

This time, Jacobs took the lead. Karl assisted.

After surgery, blood began pooling around Alexcia’s lungs. A vein in her esophagus had burst. It isn’t clear why. She had to return to the operating room.

The next day, nurses noticed Alexcia was less responsive. A brain scan showed she had suffered a stroke. Neurosurgeons removed a portion of her skull, so her brain had room to swell. They put her in a coma.

When Alexcia woke up, she could no longer control her movements or stabilize her neck. She looked “like Gumby,” recalled her mother, Rosana Escamilla. Alexcia stared vacantly at her parents.

“She lost everything I loved about her,” Escamilla said.

Strokes during or after pediatric-heart surgery are rare. One peer-reviewed study found they happen in 5 percent of cases. Another pegged the rate as lower than 1 percent.

A variety of factors can cause a stroke, said Dr. Francisco Puga, professor emeritus of cardiovascular surgery at the Mayo Clinic. He said poor surgical technique is one of them.

———

The errors and rising death rates weren’t the first indications hospital leaders had that the program was in trouble.

Late in 2015, the four physician assistants who worked in the operating room called for a meeting with their supervisor and Colombani, the chief of surgery. They brought up specific operations that had gone badly and expressed doubt in Karl’s and Jacobs’ surgical abilities, according to several people with direct knowledge of the meeting. They spoke on condition of anonymity, worrying that going public could hurt their careers.

That December, the physician assistants had a second meeting about their concerns, this time with the surgeons, the department’s leadership team and the hospital’s new director of human resources.

Karl and Jacobs continued operating.

Four other medical professionals working in the institute told the Times they were so worried about patient safety that they met with their supervisor, human resources or the hospital ombudsman in 2015 or 2016. Three said they named Karl, Jacobs or both surgeons in the conversation.

One former All Children’s cardiologist, Dr. Elise Riddle, also noticed poor results. She discussed her experiences in sworn testimony in June 2018 as part of a hearing to determine whether her current employer, Arnold Palmer Hospital for Children in Orlando, should be allowed to open a pediatric heart transplant program.

Riddle testified that she could not access comprehensive data on the All Children’s Heart Institute’s performance, even as chairwoman of the program’s quality improvement committee.

“Essentially all cardiologists were forbidden from looking at our outcomes data,” she said.

Riddle added that the administration and the surgeons had “squashed transparency” by prohibiting discussion on ways to improve care.

“Multiple levels of administration had actually tried to hide some outcomes,” she said.

Riddle left in 2016. The four physician assistants left, too, along with several doctors, nurses and other medical professionals in the unit. Riddle described it as “a mass exodus.”

She declined to be interviewed by the Times but provided a statement calling for a “detailed, external review of the cardiovascular surgical outcomes, major complications, deaths, volumes, and the degree of or lack of transparency.”

———

In early 2017, the hospital’s leaders took a step that showed they recognized the program was struggling.

They started sending heart surgery patients younger than a month old to other hospitals, Ellen told the Times. Those are often the most difficult cases.

Leslie Lugo, Cash Beni-King and Jean Kariel Viera Maldonado all developed infections in the hospital after surgery, their medical records show. The Centers for Disease Control and Prevention considers infections “largely preventable” in a sterile hospital environment. Experts say a spike can indicate broader problems in a surgical unit.

Jean Kariel was 5 in March 2017 when he received a heart transplant. Karl was the lead surgeon. His parents were told the procedure went smoothly, they said. But when Jean Kariel returned from the operating room, he screamed for water.

His blood pressure plummeted. Karl rushed him back into the operating room.

That’s when physicians discovered the stitching connecting his new heart to a vein called the inferior vena cava had broken, leaving him bleeding internally for 20 minutes. He had a stroke that damaged much of his brain, his records show.

Jean Kariel’s parents said they were told stitches had never broken like that after a heart transplant at All Children’s. One critical care doctor told his family “they were making a sincere attempt to find the cause of this unexpected complication,” Jean Kariel’s medical records show.

All Children’s never told them anything more about it, they said.

Before the procedure, Jean Kariel played soccer and rode horses with his father near their home in the Puerto Rican countryside, his parents said.

Now he’s in a wheelchair, mute.

“I had a child who walked and talked, and they returned him to me like this,” his mother, Karen Maldonado, said in Spanish.

Later in the spring of 2017, Sebastian Vixtha, Leslie Lugo and another baby died within a week.

The deaths prompted the Heart Institute’s nursing director, Lisa Moore, to send an email to the institute’s staff about the “suboptimal outcomes in our surgical program.” She said the program’s leaders recognized “the gravity” of employee concerns and were working on a “structured action plan.”

Around that time, 3-month-old Cash Beni-King had a patch sewed over a hole in the center of his heart.

The operation’s expected survival rate: 95 percent.

Karl performed the procedure in June 2017; Jacobs assisted. The surgeons believed the hole was closed completely, according to Karl’s notes on the procedure. But tests proved otherwise. They reinforced the patch with additional stitches.

Cash came out of the operating room attached to a heart and lung support machine. Multiple attempts to wean him off the machine over the next week failed. Karl performed another surgery to reinforce the stitches around the hole. Shortly after, Cash suffered a serious stroke.

On July 3, 2017, Jacobs told Cash’s parents there was no way to save him. The next day, as his parents begged doctors to keep him alive, Cash was disconnected from heart and lung support. Distraught, Cash’s father broadcast his son’s last moments on Facebook.

At least one other baby died before Ellen had what he described as a “hard conversation” with Karl. They decided Karl should focus on mission work and academics, instead of operating at the hospital, Ellen said in April. Karl remained on staff.

Not long after, in November 2017, a team from the top-ranked Texas Children’s Hospital came to St. Petersburg to evaluate the heart surgery unit. Ellen said the hospital asked for the review. He has repeatedly declined to release the team’s report.

By the end of December, at least eight children had died.

The hospital could have sent many of those cases to other heart surgery programs. There are five in Central Florida alone, including St. Joseph’s in Tampa.

———

Even as turmoil engulfed the Heart Institute, Ellen announced he wanted to expand it.

In May 2017, he sent an email to hospital staff announcing moves that would support “continued growth of our program,” including a promotion for Jacobs to co-director.

“Our combined efforts over the past six years have pushed the quality and safety of our cardiac care forward,” Ellen wrote. “The time has come for us to leap to new heights of innovation.”

Growing programs like the Heart Institute had been central to Johns Hopkins’ strategy from the beginning.

In 2012, Johns Hopkins rolled out an ambitious plan to create new revenue sources that would ultimately double its profit, adding between $150 million and $200 million over the next few years. A portion of the money was expected to come from expanding “high-demand, high-revenue” specialty centers, company newsletters show.

The All Children’s Heart Institute fit the bill.

Heart surgery patients represent less than 3 percent of All Children’s admissions. But in recent years, they have been responsible for between 13 percent and 17 percent of the hospital’s total billing, the Times analysis shows. Heart patient billing peaked at $142 million in 2014.

The year that eight children died, the unit’s patients were billed $83 million — 10 percent of the hospital’s total.

The hospital billed another $28.5 million for 31 admissions to the Heart Institute in the first quarter this year, the latest data available.

How much of that the hospital received is unclear. Private insurers and federal programs like Medicaid and Medicare negotiate or set their own reimbursement rates, typically below full value. The final payments aren’t tracked in the state admissions data.

Ellen told the Times in May that patient safety and quality — not money — drive the hospital’s decision-making.

“I don’t actually know how much money the program makes,” he said.

In April 2018, the hospital began flying in a surgeon twice a month from the Johns Hopkins Hospital in Baltimore to lead all heart operations, Ellen said. But the arrangement ended after six months, when the surgeon took a job in Chicago.

Although Jacobs and Do are still listed as surgeons on All Children’s website, the hospital isn’t performing heart surgeries, according to its statement to the Times. Karl was removed from the website in July. The hospital didn’t answer questions about whether he is still employed.

———

The Heart Institute’s marketing efforts bore little resemblance to what was actually happening inside the operating room.

Online, as recently as September 2017, the Heart Institute called itself “a leading pediatric cardiac surgery and cardiology program in the United States” that provided the “highest level” of care.

A screenshot of an All Children’s marketing video was sent to a state panel along with a letter that questions its accuracy.

At one point that year, a video on the All Children’s Facebook page touted: “Johns Hopkins All Children’s Heart Surgery Program performs 1000+ heart surgeries per year.”

Actually, the Heart Institute performed 164 procedures on 106 patient admissions last year, Jacobs told the Times in April.

Dr. Jorge McCormack, a private-practice cardiologist with privileges at the hospital, sent a screenshot of the video to a state oversight committee in November 2017, raising concerns about “overzealous” and potentially inaccurate marketing efforts.

The hospital removed the video.

Few of the parents the Times interviewed were aware of the Heart Institute’s struggles at the time of their children’s surgeries. None who lost children filed lawsuits, and there is no public sign of any investigations that predated the Times’ reporting.

Some parents have since learned the hospital withheld information about their children’s care.

Katelynn Whipple’s parents didn’t know a needle had been left in her chest until after she was discharged from the hospital, they told the Times. They returned and demanded the needle be taken out. Karl denied it existed, they said.

Katelynn Whipple’s medical records refer to a “retained surgical needle,” but her parents said they were not told until after she left the hospital.

After the Times detailed her case, regulators cited All Children’s for not telling Katelynn’s parents and for not properly reporting the incident to the state, both violations of state law. Regulators also cited the hospital for not disclosing the second needle incident that year.

Ma Candelaria Tellez said she discovered her daughter Leslie Lugo had picked up pneumonia in the hospital only by reading her autopsy report, she said.

Tellez became suspicious while her daughter was still alive. She said she noticed a milky substance leaking from Leslie’s surgical wound after her second heart surgery in March 2017. The doctors denied Leslie had an infection for a week, she said.

Leslie’s medical records show that she had mediastinitis, an infection that can develop after heart surgery if a caregiver or instrument is contaminated. It occurs in fewer than 5 percent of pediatric heart surgery cases and can be linked to the expertise of the surgical team, according to published research.

Doctors told Leslie’s family that infections were “normal” and “happen all the time,” her mother recalled.

———

Glen McGowan remembers when the doctors at Arnold Palmer Medical Center told him his newborn daughter, Ca’terriunna, would need a heart transplant in late 2017.

He will never forget how one doctor reacted when he said he was transferring her to All Children’s.

“The doctor grabbed me by the arm and he said, ‘Please, don’t take your baby there,’” McGowan recalled.

But the family’s Jeep was having problems. All Children’s was an hour closer than the second nearest option. McGowan felt he had no choice.

Ca’terriunna got a transplant, performed by Do and assisted by the veteran Johns Hopkins surgeon who was flying in from Baltimore. She died at All Children’s last June. Medical records show sepsis contributed to her death.

Months later, McGowan stood outside his Avon Park home, clutching two framed photos of Ca’terriunna. His voice got quiet.

“I should have listened to that doctor,” he said.

———

Photojournalist Eve Edelheit, data reporter Connie Humburg, reporter Divya Kumar, photojournalist Martha Asencio Rhine and news researcher Caryn Baird contributed to this report.

———

©2018 Tampa Bay Times (St. Petersburg, Fla.)

Visit the Tampa Bay Times (St. Petersburg, Fla.) at www.tampabay.com

Distributed by Tribune Content Agency, LLC.

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