Group convenes to heal Ugandan orphan's heart

Staff WriterMay 19, 2009 

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— Mending Patrick Kahuma's heart was the easy part.

The harder mission was patching together the resources to fly the orphan, who had somehow survived 18 years with an unpredictably lethal heart defect, from his home in Uganda to North Carolina.

On Monday, a world away from his mud-hut village of Kaihura, the young man flashed a thumbs-up to his benefactors as he was wheeled into a cardiac catheter lab at UNC Hospitals. There, in less than three hours, a pediatric cardiologist repaired a faulty heart valve and worked to close a hole between the upper chambers.

The procedures, routine in the United States on infants and toddlers diagnosed with the congenital defect, were beyond the scope of hospitals in Uganda. Kahuma's defect wasn't even diagnosed until two years ago, when Wake Forest pediatrician Dr. Dirk Hamp was on a mission to Uganda and heard an obvious heart murmur.

All Kahuma knew was that he tired easily.

"He hasn't been to school since the second grade because he couldn't physically make the two-mile walk up and down hills to the school house," Hamp said.

Hamp set about finding a way to get Kahuma the care he needed.

Now, as more people and groups have joined the cause, Kahuma has become the face of a growing connection between North Carolina and Uganda.

Hamp and his wife, Paige, met Kahuma in 2007 when they went to the African nation to adopt their daughter, Jane. The little girl, orphaned when her mother and sister were murdered by her uncle, lived in the same village as Kahuma.

As they met their daughter during that first visit, the Hamps also worked with the other orphans. Dirk Hamp put his medical training to use, providing routine checkups. When he examined Kahuma, he said, the heart murmur was so loud he almost didn't need a stethoscope to hear it.

The couple vowed to find a way to save young man, and to improve the lives of the other children. They helped form a nonprofit organization, Embrace Uganda, to support the orphans and began working with their church and others throughout the state to collect donations and raise money for mission trips.

Dirk Hamp also went to work on a medical solution for Kahuma.

A fortuitous friendship

By coincidence, he met Dr. Keith Kocis, a pediatric cardiologist at UNC Hospitals who was treating a patient Hamp referred. Kocis also had a mission in Uganda, running a medical outreach program between the university and a hospital in Kampala, the nation's capital. Hamp told Kocis about Kahuma, and the two agreed to collaborate so that Kahuma could have the procedure, which typically costs more than $20,000.

Everyone pitched in. Hamp's church, Wake Forest Baptist, raised funds, as did Embrace Uganda. UNC Hospitals offered a discount. The medical device manufacturers donated their materials. A Rotary International charity, Gift of Life, adopted the cause. A group of students at UNC-Wilmington put on a skateboard exhibition to earn money. Samaritan's Purse, the faith-based organization run by Franklin Graham, arranged travel and other logistics as part of a larger effort to bring children to the United States for medical care.

Kahuma was among a group of 30 Ugandan children flown to 13 different states. He arrived May 9 at RDU International Airport, into the arms of the Hamps, who he calls "da-da and mom."

A tricky surgery

Thin and boyish, Kahuma speaks very limited English, but he seemed unfazed by the activity at the hospital as doctors and nurses prepared for the procedure. A translator explained what was going on, and his aunt, who raised him since he was orphaned at age 1, stood watchfully at his side.

The translator, Lois Aoli, said Kahuma was eager to have his heart repaired.

"He's very strong," Aoli said. "He knows everything will go well."

As he was wheeled in, Dr. Elman Frantz explained the procedure. The narrow pulmonary artery, he said, would be expanded by a balloon deployed through a long, thin tube called a catheter, which he would route up an artery in Kahuma's leg. The hole would be repaired with a coiled patch, also implanted through the catheter.

Frantz said the procedures are typically done on infants or young children, and would be more difficult to perform on Kahuma. His heart had compensated for the defects and become enlarged and thick.

The valve procedure went without problems, but the patch on the atrial defect did not deploy correctly. A second procedure began Monday night.

"We don't often see disease this severe or longstanding," Frantz said. "It's a good reminder of what we take for granted."

Everything went well. On Tuesday, Kahuma was in good condition.

'In a good place'

Kocis said his program at UNC-CH aims to teach doctors in Uganda how to do the catheter procedures, curbing the need for sick children to make transcontinental flights.

For Kahuma, however, the journey proved fortuitous.

"This is where we need to be," Dirk Hamp said. "He would never have had the chance" if he had stayed in Uganda. "We're in a good place."

savery@newsobserver.com or 919-829-4882

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