Little Hearts, Big Dreams

by Tristan Long (’10)

One lucky patient after surgery

In a world of 6 billion people and myriad cultures, few things can truly be said to be universal. The everyday sounds of children, however, are among them.

Around the world, the melodic tones of children playing, the uneven rhythm of a toddler’s steps, and the insistent call of an infant crying cross all barriers imposed by nations, language or culture. These sounds also seem to embody the wish that all parents have for their children: to be healthy and grow up to live long and happy lives.

Fulfilling those dreams became the crucial mission of a team of 18 UNC doctors, nurses and other health care providers who traveled to Kampala, Uganda, last October to perform life-saving heart procedures on ten Ugandan children over a period of 12 days.

After a long journey that took them through Detroit, Amsterdam and Entebbe, the UNC Project-Uganda team finally arrived in Kampala, where they quickly restocked and reorganized the operating room, cardiac bypass equipment and intensive care unit at Mulago Hospital, restoring them to a fully functional state. For the next week, Dr. Michael Mill, chief of cardiothoracic surgery at the UNC School of Medicine, performed two operations per day and two additional surgeries over the final days of the mission.

In the end, ten Ugandan children, aged two to fourteen, had their severe heart defects “totally corrected,” said Dr. Keith Kocis, who directs UNC Project-Uganda.

Making the transition from a state-of-the-art American hospital to a resource-limited setting was a process refined by time and experience. “The first year we started from scratch in setting up the cardiac unit,” said Karla Brown, RN, pediatric nurse practitioner at NC Children’s Hospital. “We had old monitors, ventilators that didn’t work the best, electrical discrepancies between donated equipment and what [the Ugandans] had—so cords were everywhere.”

Still, this was a vast improvement over what they encountered during their first trip to Uganda in 2004. The place they worked in was a mere “shell of a building,” Kocis said. The pediatric care unit was glorified “walk-in porch” with lights and electricity, and absolutely everything had to be shipped in. On that first visit, Kocis and the team hand delivered more than 350 pounds of medications and medical equipment. “It was difficult,” he admitted. “We learned more than we taught. We were deeply enlightened.”

To take on a project of this scale and complexity, you need a lot of help. Fortunately, many individuals and organizations, from both Uganda and the United States, believed enough in the cause to make it happen.

Saving lives to honor a beloved colleague

Dr. Keith Kocis improvises a work space at Mulago Hospital

While UNC Project-Uganda brings life and hope to Ugandan children and their families, it is one borne out of tragedy.

In 2003, Dr. Amal Murarka, a pediatric intensive care physician at UNC, was killed in an automobile accident while driving home from the beach. Before joining the faculty at UNC, Dr. Murarka spent a year at Makerere University in Kampala participating in HIV research which ultimately led to the discovery of the first drug to successfully prevent mother-to-child transmission of HIV.

Following his death, Dr. Kocis was moved to action and established the Amal Murarka International Pediatric Health Foundation. Dr. Kocis is professor of anesthesia and pediatrics and adjunct professor of biomedical engineering at the UNC School of Medicine. Kocis and Murarka both trained in pediatric critical care at The John Hopkins Medical Institutions. “We wanted to make sense of this tragedy and memorialize Amal in some meaningful way,” said Kocis.

To best honor Murarka’s life and work, Kocis and his colleagues decided on a global health initiative. The problem was, the group didn’t have any experience delivering medical care internationally.

Kocis knew he would need a tremendous amount of advice and assistance to turn this idea into a reality.

The first to step in and help was Amal’s father, Dr. Shyam Murarka, a retired professor of materials science and engineering. As someone well connected in the global health community, he was able to raise most of the funds needed for the inaugural trip.

Armed with a little money and a lot of passion and energy, Kocis and his colleagues at UNC had to decide where to focus those energies to best honor their late friend and colleague. In the end, they chose the place where Murarka’a research career began: Uganda.

In 2004, Kocis and a four others went to Kampala to establish the country’s first pediatric intensive care unit at Uganda’s national hospital, Mulago Hospital.

Subsequent trips focused on pediatric cardiac surgery. Together with colleagues from Children’s National Medical Center in Washington, D.C., the foundation built a cardiac ICU at Mulago and completed 20 life-saving pediatric cardiac surgeries in 2007 and 2008.

At the end of 2008, the UNC Uganda team formed a partnership with the Institute for Global Health & Infectious Diseases to formally recognize these efforts and establish UNC Project-Uganda.

Someone has to be first

Edward's grandmother, Edward, and team member Ruben Bocanegra, PA

To date, UNC Project-Uganda has performed more than 50 pediatric heart surgeries. Of those 50 children, one had to be the first. One child had to have the courage to trust complete strangers with the terrifying process of open heart surgery.

Enter Edward.

“I’ll never forget Edward, our first patient,” Brown said. Edward had a ventricular septal defect, or hole in the lower chambers of the heart, which the team sucessfully repaired. Because Edward sailed through his surgery, “he became our ambassador for the following nine kids who underwent surgery during that first trip.”

The next year, Edward was back, this time in a supporting role. Another boy about Edward’s age was very anxious about the surgery, and Edward was there to reassure him. “You could see this boy’s face relax as Edward told him he had surgery the year before and that everything would be all right,” Brown said.

As heroic as he was, Edward’s surgery almost didn’t happen.

Orphaned by AIDS, Edward was being cared for by his grandmother. In a panic over the upcoming surgery, she came very close to giving him food right before his operation, just so she could stop it. “But she took a leap of faith,” Kocis said, and trusted the UNC team to fix Edward’s heart. After the surgery, she was jumping up and down and literally screaming for joy. “It was an incredibly emotional moment,” Kocis said.

There are many more like Edward, patients who touched the lives of everyone on the team and who will not ever be forgotten.

As wonderful as these success stories are, the reality is that for every patient who is helped, there are many more who do not receive these life-saving procedures. At any given moment, Kocis said, “there are children dying all around us from conditions that wouldn’t occur in the United States.”

When the team arrived in Kampala in October 2009, they had a database of 300 surgical candidates. The list was reduced to 15 and then to the final ten. A few were eliminated because of their HIV status. Some of the less critical patients were added to the list for next year. Others were simply too young or their defects too complex for surgery at Mulago Hospital.

“We can’t help all of them,” Kocis said. “You don’t want to say ‘no’ to any child, and so these are very difficult decisions to make.”

A lasting impact

Karla Brown, center, instructs nurses at Mulago Hospital

As the Project Uganda team will tell you, each member of the group contributes in a way that is critical to the mission’s success. This year’s team of 18 included one heart surgeon—or as Kocis refers to him, the “main man”— six ICU nurses, three cardiac intensivists, two respiratory therapists, an anesthesiologist, a nurse practitioner (“scrub nurse”), a physician’s assistant, and a biomedical engineer.

Each member of the UNC team is paired are the Ugandan health care workers, whose importance and contribution should not be underestimated. “These are extremely bright, highly-motivated, and wonderful people,” said Kocis.

The Mulago team has independently performed these heart surgeries on eight additional children. They began at a very basic level, but are increasing in complexity. “We’re very pleased with what they’re able to accomplish,” Kocis said.

Unfortunately, the Ugandan staff are hampered by poor infrastructure and virtually no high-level training opportunities outside what the UNC team provides during their trips.

But little by little, progress is being made. UNC Project-Uganda is teaming with Uganda’s president, Yoweri Museveni, and the first lady, Janet Museveni, the U.S. ambassador to Uganda, Ugandan Department of Health to improve the resources available to Mulago Hospital and its staff. Kocis wants to “facilitate a national effort.”

Most recently, UNC Project-Uganda has formed a critical partnership with the GE Foundation to continue to advance the clinical and educational goals of the program. The team is organizing a fifth mission for early 2011 to perform ten more heart surgeries while providing additional training for the Ugandan medical staff to increase their ability to perform increasingly complex operations on their own.

In addition, the GE partnership will allow UNC Project-Uganda to take the first steps toward establishing regional health care delivery system, with initial efforts focused on providing joint educational programs between UNC, Mulago Hospital, and Mbarara Regional Hospital at Mbarara University of Science and Technology.

“This new partnership will allow us to make a lasting, sustainable impact on the health of the people of Uganda,” Kocis said.

Many levels of joy

"Main Man" Dr. Michael Mill checks on a patient in the ICU

The heart missions to Uganda also have a profound impact on the lives of everyone involved. Team members form strong, lasting relationships with each other. They also often return with a new perspective on life.

“It really brings you down to the realization that you can live with very little and yes, be happy,” explained Brown, who questions whether the American appetite for consumption and modern luxuries really fulfills us in the ways we assume. “It usually takes me several weeks to get out of a ‘funk’ after returning from Uganda,” she said. “I realize how much I have and don’t really need.”

Kocis agrees that working in Uganda is an eye-opening international experience and a chance to give the gift of life to children and relief their families. It is also an opportunity to continue to remember Dr. Murarka. “There are so many levels of joy,” he said.

If you would like to donate to UNC Project-Uganda, visit our donation page.