Tearing at Children’s Heart

The controversy that has shaken Children's Hospital to its core

TEN-YEAR-OLD DARIUS SOLEIMAN didn’t know that the operation he was scheduled to have would end his life. All he knew was that it was going to make him normal again, that it would, at last, relieve him of the congenital heart condition that left him unable to keep up with his schoolmates on the playground. He couldn’t wait.

He circled the date on his calendar, June 30, 1997, drew up a wish list for gifts after surgery, and invited friends to visit him in the hospital. When the day finally arrived, he was so excited that he woke up his parents at 5:30 in the morning. “It was like the happiest day of his life,” says his father, Moe.

Darius never woke up from surgery. After days of waiting, his parents say they were told by the hospital that an air bubble must have accidentally gotten into Darius’ circulatory system during the operation and caused brain damage.

His parents’ grief was overwhelming, but they blamed fate rather than the hospital, the nationally renowned Children’s Hospital and Medical Center, or the surgeon, Flavian Mark Lupinetti, chief surgeon of the hospital’s heart center. The Soleimans began to have questions, though, when they received an anonymous letter: one typewritten paragraph sprinkled with grammatical errors.

“I wake up at night thinking of you and how much your grief and loss,” the letter began. It went on to make outrageous charges. The Soleimans called the hospital and, when that didn’t entirely satisfy their quest for answers, went to a lawyer. According to Darius’ parents, the lawyer felt no legal action was appropriate. None of the charges in the letter has ever been substantiated, and the identity of its author remains a mystery.

The mystery extends to dozens of anonymous letters sent over a period of years, first to hospital administrators, then to parents of heart center patients who died, and finally to parents of prospective patients. Like the Soleiman letters, these missives made shocking charges about surgery performed at the heart center and appeared to be from an inside source with access to patient names and details about their cases.

Whether the anonymous letters are the problem or the symptom of a problem is a matter of debate. Either way, they are at the center of an extraordinary drama that has enveloped the heart center and shaken the hospital to its core. “I hope you can understand the intensity of feeling,” says Children’s Medical Director Richard Molteni. He explains the letters actually talked about the “killing” of child patients. “Parents were petrified and in tears. Referring doctors were unbelievably shocked.” In the fall of last year, after the largest barrage of letters yet, the hospital took drastic action to find the letter-writer. It hired private investigators, searched through employee computer files, and covertly obtained a DNA sample of one employee by snatching a bottle from which he had drunk in the cafeteria and comparing the saliva on it to residue on two anonymous communications. “We simply can’t have our hospital and our personnel and their reputations torn apart by innuendoes and lies,” Molteni says, explaining these unusual steps.

But the hospital’s policelike response provoked even more controversy, especially the treatment of the employee unknowingly subjected to DNA testing. That employee was a 10-year veteran of Children’s named Donald Baptiste who operated and troubleshot anesthesia equipment. Well-loved and respected, he was known for rushing to the hospital whenever needed, no matter what the day or time.

The DNA test “excluded” Baptiste as the source of one anonymous communication but did not exclude him as the source of another, according to the lab report. Despite this less than conclusive finding, the hospital put Baptiste on paid leave, suggested he not return to Children’s, and told him that if he did, his duties would be markedly changed—and it also offered a settlement for legal claims initiated by Baptiste.

Baptiste vigorously denies any involvement in the letter-writing campaign. But feeling bruised by the investigation, he has not returned to Children’s and has found another job, much to the chagrin of many of his former coworkers.

“The recent mishandling of Donald Baptiste has clearly demonstrated that ethical management of personnel is less important than protection of the heart center book of business,” says an April 14, 2000, letter to the administration signed by 16 members of the anesthesia and critical care department, including its director Jeffrey Morray and a dozen other doctors.

What’s more, the letter says that staff members are leaving, “a severe demoralizing effect” has taken hold of several hospital departments, and nurses have filed a grievance with Children’s, all because of “heart center issues.” It cites “interpersonal conflicts” and, more disturbingly, “concerns over quality of care.”

That letter, a range of other hospital-related documents obtained by Seattle Weekly through a public records request, and interviews with present and former medical staff and administrators at Children’s make clear that a number of people have problems with the heart center. The controversy—fueled by struggles over power, money, and medical approach—offers a rare window into a profession that many see as the rational, dispassionate face of science.

After years of infighting, the hospital made what one administrator calls a “major decision,” in September this year. It asked surgeon Mark Lupinetti to step down from his administrative role as the heart center’s codirector.

WHEN LUPINETTI CAME to the Children’s heart center in 1993, he stepped into a simmering cauldron of institutional and individual rivalries. Recently, Children’s and the University of Washington had essentially taken over pediatric heart care in the region by consolidating several groups of cardiologists under their umbrella. The move didn’t leave much room for other facilities or doctors vying for the same patients.

What’s more, hospitals throughout the country were dealing with the embers of a flaming controversy in the field of cardiac care. Pioneers like Children’s Hospital of Boston were performing excruciatingly complicated heart operations on children at earlier and earlier ages—ages at which their hearts were so tiny that a mistake of millimeters could be fatal. The mortality rates immediately following surgery were higher than anyone was used to under the old approach of palliative care, which helped children live as long as possible with heart defects without repairing them or postponed definitive treatment until children were older. But the pioneers eventually convinced many, if not all, of their dubious colleagues that the mortality rates were lower in the long run. Under the old approach, they pointed out, many children died before a definitive operation was attempted.

To Seattle Children’s Hospital, Lupinetti looked like a man who could bring its cardiac program up to speed with this new approach and put its heart center on a par with the country’s great centers of pediatric cardiac surgery. A fairly young surgeon six years out of his second residency, Lupinetti was at one such renowned center, the University of Michigan, as the effective understudy of a prominent surgeon named Edward Bove. Lupinetti had published widely and emerged, according to a letter from one administrator here, as a “leading academic and educational force” around the country.

Says Molteni, Children’s medical director, “Dr. Lupinetti was really recruited from the University of Michigan to take Children’s heart program, which was still living in the ’80s, into the 21st century, and to do that we needed someone who had trained in more recent times.”

Eventually, Children’s brought in a second young surgeon, Brian Duncan, from another preeminent institution, Boston Children’s. With only two surgeons at the heart center, Duncan operates as a junior partner to Lupinetti.

At least one parent is supremely grateful for the new personnel in the heart program. In 1997, after a story in The Seattle Times about the heart center’s track record with a complicated procedure called the Norwood, Holly Scheyer wrote in about her daughter who had the operation two years prior and was doing well. “We should be talking about the miracles that have occurred since Dr. Lupinetti has been at Children’s Hospital,” she wrote. “Not only is he an excellent surgeon, but his optimistic and spirited outlook have assisted us in making it through some very difficult times.”

Inside the hospital, however, Lupinetti’s arrival brought upheaval, as he himself concedes. Sitting in a hospital conference room with Molteni, his medical director, and maintaining an air of confidence and sociability, the bearded and bespectacled surgeon attributes the tensions to his mandate for reform. “When I came here, it was difficult for some people. Change is always difficult. And we went very suddenly from a palliative, temporizing approach to a definitive, reparative kind of approach. Some people embraced that change; others didn’t. Some people were capable of keeping up with that change, and others weren’t. I think that many of the hurt feelings arise from the suddenness of the change and the extent of the change.”

Operations attempting a permanent repair were possible for Darius. But his original doctor advised his parents against doing them until it was a matter of life and death—they were too risky. The time came in 1995. Darius’ body was producing more and more red blood cells to compensate for its lack of oxygen; his blood got so thick that there was a danger of clotting, an event that would clog up his circulatory system. Darius’ parents took him to Children’s heart center, where Lupinetti performed a difficult operation, called a Bidirectional Glenn, that restructures the top half of the circulatory system. The operation was a tremendous success. Seven-year-old Darius, who before had trouble walking only a few yards, went home to ride a bike with training wheels.

But Darius’ father Moe, a Boeing engineer, remembers that even then there were indications the hospital staff weren’t getting along. A few days after surgery, Darius was having trouble breathing. The cardiologist and a nurse suspected a buildup of fluid around his lungs, yet Moe felt other medical staff seemed simultaneously afraid to call Lupinetti and unwilling to initiate treatment without him. A nurse did finally call the surgeon at home, and the problem of fluid was resolved the next morning when he came in.

ONE CHANGE AT the heart center that caused enormous controversy was scaling back the use of a surgical monitor called transesophageal echocardiography, or TEE, essentially an ultrasound of the heart. TEE is perhaps most crucially used at the end of an operation by a cardiologist or anesthesiologist to assess the surgical repair; in other words, to make sure all the necessary holes are closed up. If they aren’t, the surgeon can immediately fix the repair while the patient is still on the operating table, thereby avoiding another operation.

Before Lupinetti arrived at Seattle Children’s, TEE had been used for the vast majority of heart operations. Lupinetti now estimates that he requests TEE in 10 percent of his surgeries. He says he changed the policy out of concern that the TEE tubes were irritating patients’ esophagi, the perch from which TEE views the heart, and causing the patients to need feeding tubes after surgery.

While the medical profession is divided about whether TEE should be used routinely or only for particularly challenging cases, some doctors at Children’s feel strongly about its benefits. In October last year, three doctors at one time involved with the heart center—Chandra Ramoorthy, Anne Lynn, and Geoffrey Stevenson—argued that the use of TEE in open-heart surgery “should no longer be a matter of choice.”

Even when Lupinetti did request the procedure, he sometimes caused a stir by failing to ask the hospital’s reigning expert on TEE, Geoffrey Stevenson, to perform it. Lupinetti says he wanted to see what new skills other doctors might bring.

Stevenson reacted—in a shockingly public way—by publishing a study claiming that Children’s was using doctors to perform TEE who, according to the guidelines of one medical society, did not have the requisite experience. In the March 1999 edition of the Journal of the American Society of Echocardiography, he wrote about seven of the nine deaths that occurred in one year at the heart center: “The lack of timely recognition of significant problems may have contributed to poor outcome.”

In a profession where any false step can give rise to legal action, here was one of the hospital’s own essentially broadcasting to the world: Mistakes may have been made that caused children to die. Administrators plainly grasped the significance, as revealed in voluminous correspondence on the matter. “The implication is strongly made that a failure to provide . . . [a] qualified TEE physician led to missed significant problems that led to death,” Paul Herndon, Lupinetti’s codirector at the heart center, wrote in a letter to a university administrator. Herndon strongly objected to the conclusion, which he said was not supported by the data.

Lupinetti, obviously steaming as well, wrote that his review of heart center cases did not find data that corresponded to Stevenson’s, suggesting “serious error at the very least” and possibly “academic fraud.” A university committee eventually convened to study the matter criticized Stevenson for failing to get institutional permission to use the data, as well as for not revealing conflicts of interest: For one, his personal income may have been affected by changes in TEE policy. Unable to see Stevenson’s raw data, the committee found it impossible to judge his scientific veracity. (Stevenson did not return Seattle Weekly‘s phone calls seeking comment.)

Officially, that put the matter to rest. But the measured criticism Stevenson received did not stop some Children’s staff from referring respectfully to his article, nor did it soothe unease about the heart center’s failure to make maximum use of an arguably vital tool. The article fed a furious rumor mill that turned an already highly charged atmosphere into an explosive one.

The anonymous letters didn’t help. If Lupinetti felt accusatory eyes were watching him, so, too, did coworkers who believed they were under suspicion for being the mysterious author. When the hospital put a video camera up in the heart center’s operating room, some workers say the place took on an Orwellian feel.

Two years after Darius’ first surgery at Children’s, his parents had forgotten about the tensions they perceived. They were filled with joy. Their son’s surgery had given him new life. Still, for a truly permanent solution, Darius needed a follow-up operation called the Fontan procedure, which restructures the bottom half of the circulatory system. The Soleimans wanted to hold out, seeking more time with their son before undertaking another risk. They say they were persuaded by Lupinetti’s confidence and eagerness. “He’ll be normal,” Moe recalls the surgeon telling them.

ANOTHER FOCUS of concern about the heart center, voiced by some within the intensive care unit (ICU) that provides post-operative care, was the amount patients were bleeding after cardiac surgery, according to Susan Bratton, a former ICU doctor at Children’s who left because of difficulties with the heart center. Now at the University of Michigan, Bratton says, “The patients would come back bleeding, in some people’s eyes, uncontrollably. I and other ICU people were taking care of patients that were hemorrhaging. Some patients, I believe, died of complications from that bleeding.” In those cases, she says, the tubes draining blood from the chest clogged, causing a buildup around the heart and a potentially fatal condition called tamponade.

“That’s something we track routinely,” says Lupinetti, speaking about post-op bleeding. He says the heart center’s figures on bleeding compare “favorably” with those of other institutions. Children’s anesthesiologist Glyn “Jumbo” Williams, who has studied data on bleeding at different hospitals, similarly asserts that bleeding among heart center patients is within the normal range. While Williams also acknowledges that surgical skill can be a factor in how much patients bleed, he cautions, “There are just so many factors that affect blood loss.”

Still, the ICU was casting doubt on the heart center, and the heart center was returning the favor. It pushed for and got its own ICU doctors who would have special training in cardiac care, known as cardiac intensivists.

Before Darius’ second operation at Children’s, the Soleimans again detected interhospital strains. According to Moe, a difference of opinion existed between Lupinetti and cardiologist Isamu Kawabori over whether a valve needed to be repaired in addition to all the other work to be done (an issue seemingly unrelated to the boy’s death). Moe perceived Kawabori as reluctant to talk directly to Lupinetti about it. (Neither doctor will comment about this.) The surgeon didn’t think the valve needed fixing, Moe says, and the operation went ahead as planned.

Emotion overwhelms Moe as he remembers the fateful day. A solid, dark-haired man who still seems immersed in quiet grief, Moe stands up in his Kent living room and walks into the kitchen to get a glass of water and calm down.

When he returns, he tells of how Lupinetti emerged after operating on Darius to talk to his parents. Nothing seemed amiss. Moe remembers thinking that it was his son’s last surgery. He was so happy he wanted to kiss the surgeon. But near midnight, Darius’ parents were called to ICU and told there was a problem. Darius hadn’t woken up. One day passed, then two. Moe recalls: “Lupinetti kept saying, ‘No, no, it’s not too late. He’ll wake up.'” But Moe recalls, the nurses and the anesthesiologist who had been in the operating room advised them against getting their hopes up. Finally, Moe says, a CT scan confirmed that brain damage had occurred. An air bubble was the suspected culprit.

MEDICAL RECORDS typically provide only dry numbers and conditions, so even with all the records at hand, it can be hard to make a judgment about a surgeon’s ability. If a lot of interpretation is involved, Lupinetti interacted with coworkers in a way that did not inspire generosity. Bratton, the former ICU doctor concerned about post-operative bleeding, recalls interactions about hemorrhaging patients. “When I approached Dr. Lupinetti, if a child was bleeding excessively, about returning to the operating room, he would become angry.” Even when a treatment plan did not seem to be working, she says, Lupinetti was not open to alternatives raised by colleagues.

The Washington State Nurses Association, in a letter last January explaining its grievance to members, went so far as to speak of “verbal and psychological abuse” toward ICU nurses by heart center physicians. While the Nurses Association refuses to elaborate, citing the sensitivity of the matter, the letter said that the situation had reached the point of interfering with nurses’ ability “to provide safe and comprehensive patient care.”

Administrators believe the core of the heart center’s problems revolve around interpersonal relationships rather than quality of care. But in the medical profession, the two things are not easily separated. It is widely believed that the best outcome for patients comes when medical providers of various disciplines work smoothly together, bringing their distinct expertise to bear.

And that—everyone from top administrators to disgruntled staff admits—wasn’t happening in relation to heart center patients. That’s why some doctors, such as anesthesiologist Jumbo Williams, decided they didn’t want to be involved with the heart center anymore. While he doesn’t single out Lupinetti, Williams says, “I felt the team dynamics had deteriorated to a point where I was worried that they could impinge on patient care.”

Lupinetti points out that local cardiologists refer their patients to him, so they must believe he will provide the best possible care. And he believes he keeps an open mind. He admits some culpability, however. “This is a very high-stress, high-risk area of practice, and there are times when I am less enchanting than others,” he says.

His medical director in the seat beside him laughs. Surgeons the world over are notorious for their temperamental behavior—the enfants terrible of medicine. The demands of cardiac surgery, Molteni asserts, magnifies this trend: “In my 30 years of experience, I would have to agree that the people that I have found the most difficult to work with over time have been the cardiovascular surgeons. I joke with them about it, because I also recognize that if I knew every day I had to walk into a room and—depending upon the particular disease I was treating—30 or 40 percent of my patients were not going to leave that room, and I had to come out and face the parents, and that the skill that I used in the room and the support of the entire team around me was going to be what made the difference, but it all was going to fall on my shoulders. . . .”

Lupinetti may have seemed particularly touchy to his coworkers. But Children’s Chief Operating Officer Patrick Hagan says you have to remember that one of the surgeon’s coworkers, it seemed, was firing off missives filled with shocking allegations. Hagan says it was a “seminal moment” last fall when the administration finally discussed the matter openly with staff, some of whom were unaware of the letters. “Many people then had a better understanding for behaviors they had seen in the heart center staff they couldn’t previously understand.”

Privately, at least one of Lupinetti’s supervisors was expressing frustration with Lupinetti. “I strongly believe that Mark has failed as a leader,” Children’s head of surgery, David Tapper, wrote last fall in an e-mail that refers to Lupinetti as a loose cannon. Tapper continues, “At this time I would offer him [Lupinetti] the opportunity to resign.”

“Mark is a superb surgeon,” Tapper says now, when asked to elaborate on the e-mail. “But he’s not a real good communicator.”

The Soleimans relived their anguish when they received the anonymous letter. They wonder whether what they call “politics” is behind an attempt to discredit Lupinetti. At the same time, they feel that such politics can be detrimental to patients. “The thing that really bothers me, that still bothers me, is the way they were fighting all the time,” says Moe. “The cardiologist sees a problem with the valve; the surgeon doesn’t. They don’t want to talk to each other. Meanwhile, the patients are hanging in the middle. You’ve got to consider everyone as a team. You’ve got the surgeon and the cardiologist and everyone else. If they’re not playing together, how can you expect to win?”

Last fall was also the time that Hagan himself took over management of the heart center. He went on rounds with doctors in the ICU, something he says is “pretty wild stuff for a COO.” And he brought in facilitators to smooth relations between heart center doctors and the nursing staff. “Things are much better than they have been,” he said optimistically this summer.

Obviously, things were not really so rosy. A few months later, the hospital made its decision to have Lupinetti step down from his administrative role, still leaving him as the program’s top surgeon. “Mr. Hagan spent many months working on [Lupinetti’s] communication skills,” Tapper explains. “He felt after eight months of due diligence that he was no further ahead.” (Hagan declined to speak with the Weekly directly about the change in Lupinetti’s status.)

Given the level of controversy surrounding the heart center, for not months but years, one might ask why it took so long for the hospital to take even this considered action. Some believe that the hospital has been loath to interfere with the heart center because of what some doctors called its “book of business.” Children’s anesthesiologist Lynn Martin, in a May e-mail to his supervisor, put it more bluntly: He wrote of the “administration’s flawed decision to support the morally questionable leadership of the heart center on every occasion based on a potential for lost revenue.”

As the administration concedes, the heart center is one of a handful of specialty practices that the hospital relies on to generate revenue. “I believe this program is essential to Children’s Hospital and to us,” the chair of the university’s surgery department, Carlos Pellegrini, wrote in a 1993 letter as Lupinetti was being recruited. The hospital needs the program to counteract its dropping patient census, he wrote, and the university needs it to hold a unique position in the region “from the point of view of the managed care market,” by offering “a full range of cardiac surgery from neonates to the elderly.”

The heart center has indeed proved profitable. Lupinetti, in one letter last year expressing dissatisfaction with his income, referred to “truly enormous amounts of money generated for CHMC [Children’s] by me.” The cardiac surgery program accounts for more than 10 percent of the hospital billings, according to Lupinetti’s figures.

Administrators strongly deny making decisions based on revenue. They’ve had a hard time pinpointing blame in this whole sprawling saga, says Edward Verrier, the university’s head of cardiothoracic surgery. “I’ve been around it for 10 years, and I don’t understand it. I don’t understand the factions; I don’t understand the motivations.” But he and other administrators insist that one thing is clear: By the objective measures of results, Lupinetti and the heart center are doing a fine job.

“We have investigated these allegations several times,” COO Hagan wrote to the Weekly, referring to the concerns raised by Children’s staff, “and twice have asked independent outside experts to review them as well. The conclusions in each instance have been the same—Children’s has one of the finest pediatric heart care programs anywhere. The staff of the heart center are saving, and improving, the lives of children who would otherwise die.”

The first review by outside experts was done in 1996 by a team of three doctors. It noted the need for increased collaboration among disciplines but concluded that “mortality rates at Children’s compare favorably with pediatric cardiac surgery programs elsewhere in the country,” according to a summary prepared by the hospital.

One of the three doctors from that review, a pediatrics professor at the University of Minnesota named James Moller, returned to Children’s in February and submitted a follow-up review in May. According to a hospital summary, he again remarked on the need for more collaboration, though he saw progress. He also made a point of stressing the importance of TEE and recommended that Children’s train more doctors in its use. However, he reiterated that the heart center’s mortality rates are on a par “and in many cases” are better than those of other programs, according to the hospital summary. Children’s mortality rates have been dropping, from 8.2 percent for all heart surgeries in 1996 to 4 percent last year.

Even the hard, cold numbers of mortality rates are more ambiguous than they seem. Doctors caution that every case has its own particular circumstances that might make a comparison invalid. And institutions can categorize cases differently or exclude cases from a category because of complications.

There’s also the tricky question of who you compare your statistics to. What is well-known in medicine, but less known among patients, is that hospital results vary widely according to their experience in particular arenas. Children’s—as well as the external reviews—compares heart center mortality rates against those of 52 heart programs throughout the country and elsewhere that belong to an organization called the Pediatric Cardiac Care Consortium.

But one has to keep in mind that most of the country’s famous heart centers do not belong to the consortium. Peter Laussen is an anesthesiologist who is a key player in the heart program of top-notch Boston Children’s and a member of the team that did the first external review of Children’s here. Laussen says he noted at the time of the review that “a center like Seattle Children’s, a terrific hospital that covers a huge area in the Northwest with a large patient population, should be looking at the results of large individual centers such as Children’s Boston and CHOP [Children’s Hospital of Philadelphia].” Although he emphasizes that the review found no specific problems with patient care, he says, “[Seattle Children’s] results in some procedures were not as good as what we would achieve. That reflects volume of cases more than anything.”

“That raises issues again about who should do these surgeries,” Laussen continues. “Should they be done by hospitals who do 100 to 200 patients a year or those that do 600 to 1,000?” Seattle Children’s heart center performs about 400 operations a year, making it a midsize program, while Boston Children’s does about 1,000.

Those “issues” about who should do surgeries are not typically aired before the public, which often has little to go on when choosing hospitals. Many institutions are averse to disclosing their mortality rates, saying that a comparison might be apples to oranges, and generally are not required to do so by law. Nonetheless, institutions continually take stock of one another’s numbers.

In pediatric heart surgery, the discrepancy in mortality rates is most striking for the field’s most complicated operations. One, the multistage procedure known as the Norwood that attempts to compensate in part for a malformed ventricle, is so difficult that some cardiac programs don’t attempt it at all. In 1996, according to The Seattle Times, Seattle Children’s saw its first-stage Norwood mortality rate rise to 65 percent, out of 20 patients, a larger number than usual for the institution, which has averaged about 13 Norwood operations a year over the last six years. Since then, the mortality rate has been running about 30 percent to 40 percent, according to Lupinetti. In the same time period at highly regarded University of California at San Francisco, which performs about 25 Norwoods a year, the mortality rate for the procedure has averaged 20 percent.

Asked about a different procedure called the arterial switch, a doctor at another top hospital says hospitals “should be having” a mortality rate of less than 1 percent, as does his institution. The figure at Seattle Children’s, for a five-year period ending in 1999, was 10 percent.

Children’s COO Hagan admits that there are more impressive figures elsewhere, which he calls “something to strive for”; however, he and his staff argue that not all heart patients can wind up at the one or two biggest programs in the country.

Although he has not discovered any new information, Moe Soleiman still blames himself for not questioning Lupinetti about his track record and for not investigating other hospitals. In telling his story, he hopes to alert other parents to do otherwise. “That’s the main thing. It’s like I’m hiring somebody. I want to look at his resume instead of being intimidated—instead of looking at a surgeon like God.”

Three years after Darius’ death, his parents continue to wonder, and to mourn.