On top of the world

Children's Hospital Boston reaches out to help patients around the globe

by Cyril Manning

Bess Pappas, Gloria Jozwicki and Antonios Vlahos, MD, are three of the more than 6,000 staff and employees who make Children's Hospital Boston a global leader.

Twenty-eight years ago, Bess and Chris Pappas watched their son being wheeled into the operating room, where surgeons would attempt to correct a life-threatening heart defect. As the doors swung shut behind their child, his parents felt helpless. But it wasn't their own ordeal that changed Bess Pappas' life that day, it was the suffering of another woman in the waiting room: a young Italian mother whose 2-year-old was also having surgery. She spoke no English and couldn't communicate with the hospital staff. Children of Greek immigrants, Bess and Chris Pappas imagined how the woman must have felt to leave her home to fight for her baby's life in a strange place on the other side of the globe. "I felt her trauma and fear," says Pappas. "She was literally all alone." That day, while doctors worked to fix both children's hearts, Bess Pappas went to a Greek Orthodox church and made a tama, "the most sacred, binding oath you can make to God." She vowed that she would help families in that agonizing situation in any way she could.

After her son's surgery, Pappas and her family returned to their Massachusetts home. She began to volunteer at Children's Hospital Boston—first as a Greek translator and, increasingly, as an advocate, fundraiser and support system for Greek children with cardiac problems. In 1974, she and her husband formally established the Hellenic Cardiac Fund, an all-volunteer organization that today helps 30 to 40 Greek children a year receive critical care at Children's.

While Pappas' dedication to these trans-Atlantic patients stems from personal passion and beliefs, the success of the Hellenic Cardiac Fund has paralleled the health care industry's trend toward globalization and patient choice. Today, empowered with knowledge made ever more accessible by the Internet, families around the globe seek out the very best care for their children. That care is often at Children's, and nowhere is that global preeminence more evident than in Cardiology and Cardiovascular Surgery, two separate but closely aligned departments within the hospital.

Although several other departments also draw substantial numbers, in recent years the cardiac programs have served more international outpatients than any other department. Richard Jonas, MD, chief of Cardiovascular Surgery, attributes the strength of his department's international presence to greater access to information among families worldwide. "Families are becoming extremely well educated," Jonas says. "The reputation that we provide exceptional care, and look after the families as well as patients is passed on very quickly."

And that reputation pulls weight with more than just individual families. Increasingly, foreign insurance companies and state-run health care systems are referring patients across international lines. The governments of small, wealthy countries such as the United Arab Emirates (UAE) and Bermuda—both of which send a significant number of patients to specialists at Children's—recognize that it can be more pragmatic to send complex cases across the globe rather than try to provide all services in their own country. The state-run health care system of Iceland, for example, is regarded as excellent, yet it sends its complex pediatric cardiac cases to Children's.

Building relationships
Children's has earned its reputation as a leader by its experts' deep involvement in global health care. In addition to publishing prolifically in academic and scientific journals, Children's doctors often pack their bags and head to the far corners of the world, building international relationships the same way they build relationships with their patients—face to face. Gary Fleisher, MD, pediatrician-in-chief and chair of Medicine, was one of 10 Children's health care providers who shared their expertise with nearly 300 doctors from across the Middle East at a conference co-sponsored by Children's in the UAE. Fleisher also recently spoke at the opening of Japan's first children's hospital. Tellingly, several members of the new hospital's staff trained at Children's before returning to Japan to practice. Because so many Children's physicians reach out to other countries in similar ways, says Fleisher, Children's attracts both patients and staff from around the world. "If someone from our faculty speaks at an international conference about a technique he developed or an approach to a disease he discovered, the physicians who attend will have patients who can benefit from that knowledge, either through a referral to Boston or because a physician hears something she can apply to her own work."

Jonas says Children's cardiac programs' sponsorship of conferences in locations as diverse as China, Puerto Rico and the UAE fits in with its mission of education. In 2000, Jonas organized a cardiac conference in the UAE, building the foundations of a lasting relationship. "There's a real thirst for knowledge around the world to learn how to do what we've been doing here for a long time," he says. "There's not much point developing these new techniques if you're not going to share them. Our responsibility is not just to those fortunate enough to receive care at Children's, but to children worldwide."

The responsibility for attracting and managing the cases of international children who can make it to Boston falls to Carol Sayles, director of Children's International Center. The no-nonsense Texas native strives to connect families in need with the clinical programs that offer their best hope. "In this era of global patient options, patients are making choices based on service, care and cost," says Sayles. "What separates us from other institutions is the breadth and depth of the clinical care and support we provide to families. That's what gives us our global reputation."

Size matters
Like many programs at Children's, Cardiology and Cardiac Surgery benefit from their large size and high patient volume. With a combined clinical staff of over 55 physicians who see more than 1,000 cardiac surgery patients per year, Children's is home to one of the largest combined pediatric cardiac programs in the world. The relationship between size and success was documented in a 2001 study by the Institute of Medicine that concluded higher patient volumes correspond to better outcomes. According to Jane Newburger, MD, associate chief of Cardiology, that volume-to-outcome relationship is particularly important when it comes to highly specialized care. "The fields of pediatric cardiology and cardiac surgery comprise many very rare disorders that are incredibly technically complex to repair," she says. "Patients are referred to Children's from around the world because there is almost nothing we haven't seen before."

Two other characteristics distinguish Children's cardiac care at a global level, says Newburger. "First of all, people come here because all of the institution's services are outstanding. When you're looking at the repair of a child's heart, it isn't only the surgeon or the interventional cardiologist who matters. The staff of the intensive care unit, the level of care provided by nurses, and the quality of the fellows and residents matters. At Children's, we are supported by all of these things, as well as excellent labs and imaging technicians who provide first-rate information that helps us make decisions. All the pieces fit together in a way that works to the advantage of the patients."

"Second," Newburger says, "the individuals who do the procedures are the very best in the world." This fact accounts not only for the expert patient care, but also for another way Children's steps up as a global leader in pediatric health: training the world's best doctors.

A Harvard Medical School teaching hospital, physician training is one of Children's four missions (along with clinical care, research and community service). When choosing fellows to train in their departments, Richard Jonas says the cardiac programs look at very specific criteria. "We will consciously look at who shows promise to bring cutting edge medicine to his or her country. We often take individuals who we know are going to improve the quality of care where they live, and those individuals will often send patients back here if the level of care they need is too great for the country that they're coming from. It's a mutually beneficial relationship."

Of 32 physicians currently training in Children's Cardiology Department, 12 are from other countries. They come from Australia, Argentina, Canada, England, India, Israel, Germany, Portugal and Greece to learn cardiac specialties from the best in the world. With two years of on-the-job training at Children's behind him, Antonios Vlahos, MD, of Greece, has learned every aspect of cardiology and is now specializing in cardiac imaging. "This is the best place in the world to train," says Vlahos. "The program has a huge practice with so many patients, and while training here you are going to see everything that is described in the textbooks. That's not so common in other places." Because the program has leaders in every subspecialty of cardiology, Vlahos says, "there is nothing you can't learn in this place."

A long road to Boston
From 1999 to 2001, approximately 4,500 international patients received care at Children's. About 30 percent were from the Middle East, 40 percent were Latin American and the rest were from across Europe, the Caribbean and Scandinavia. Although the number of international patients has fallen since the events of Sept. 11, 2001, many international families continue to come to Children's.

For patients, however, the clinical care is often the last step on a long road. Their relationship with the hospital begins the moment they contact the International Center, where a team of patient and financial representatives work to take the anxiety and fear out of their difficult journey.

Gloria Jozwicki is one of four bilingual international patient representatives in Carol Sayles' International Center. Three financial representatives and two supervisors make up the rest of the staff. Jozwicki, a former social worker from Colombia, works with families from Central and South America and the Caribbean, juggling up to 40 cases at any given time. Typically she and her coworkers are the families' first contact with Children's, and they remain their liaison to doctors and other Children's services. When they call, Jozwicki says, "The families have a lot of information already. They are looking for the best care for their kids, and usually the Internet has opened a world of knowledge to them." She and her coworkers must receive each child's medical information in English, along with the required registration and financial information. They forward the medical information to the appropriate specialists, and if doctors can offer a treatment and accept the case, the international patient representatives carefully estimate the costs. The staff of the International Center arrange transportation, accommodations and other logistics, schedule hospital interpreters for all appointments, and stay in touch with families during their stay. They will even help families find specialty groceries and appropriate religious services.

Sayles cautions her staff to be especially careful in making cost estimates. "About 40 percent of our patients are self-payers, meaning they don't have insurance and their government isn't covering their care," she says. "The vast majority of them are not wealthy people."

While in broad terms, Sayles' job—connecting patients from abroad to experts at Children's—is similar to the work Bess Pappas does as a volunteer, their different responsibilities make them stand apart. Fittingly, it would be tough to find two people who make more dissimilar impressions. The soft-spoken Pappas sees Children's as "a beacon of hope and light for families in need," and can focus her efforts on the group of patients to whom she is personally committed. Sayles, on the other hand, has a Texas twang and shoots financial data and patient volumes straight from the hip. She's charged with keeping patient volume up in an increasingly competitive global market, and with serving the needs of every international patient who comes through Children's doors. The women embody two distinct, crucial aspects of Children's Hospital Boston—the compassion and humanitarianism at the core of its values, and the sound management that allows it to serve hundreds of thousands of patients, now and into the future.

It's a future in which at least one thing is certain: more than ever, families around the world will continue to seek out the best care in the world for their children. "We are a global leader," says Sayles. "And we couldn't turn back the clock, even if we wanted to."

Children's Hospital Boston recently formed the Global Council, a philanthropic society of international patient families committed to advancing pediatric care and medical research. Members provide essential support for patient care, research and international programs, while educating friends and associates about Children's mission to provide the finest pediatric care worldwide. For more information contact Jennifer Schimmel in the Children's Hospital Trust at (617) 355-2291 or jennifer.schimmel@chtrust.org.