by Vikki Mioduszewski
Special to the Daily Record
Two boys from Uganda, Benny Hinn Ouma, 5, and Francis Bbuuka, 2, are benefiting from the kindness of American strangers, thanks to help from two charitable organizations, Jacksonville-based Patrons of the Hearts, the organization that provided all medical support and costs, and the Boone, N.C.-based Samaritan’s Purse, which covered the travel and stay expenses.
Both boys have received cardiovascular care and surgery at no charge to repair congenital heart disease that has affected their quality of life and could have potentially ended their lives in the years to come.
Pediatric cardiologist Stephanie Lacey with the University of Florida Pediatric Cardiovascular Center affiliated with Wolfson Children’s Hospital met the boys while on a medical mission trip to Uganda last month on behalf of Samaritan’s Purse and Patrons of the Hearts.
After she and colleagues with Samaritan’s Purse screened more than 150 kids with congenital heart disease, she, the boys, their mothers and an interpreter came to Jacksonville so they could get the cardiovascular care they needed.
“Benny was diagnosed at birth with Tetralogy of Fallot and a double-chamber right ventricle, which required open-heart surgical repair not available in his country,” explained Lacey. “Children with Tetralogy of Fallot, which causes a chronic lack of circulation and a blue appearance, often instinctively “squat” to oxygenate themselves. Benny squatted the whole trip from Uganda to Jacksonville, and when we walked through airport, he’d walk on his hands to get air to his lungs.
“Francis was originally diagnosed with pulmonary stenosis, which is caused by an abnormal pulmonary valve and creates increased work for the right side of the heart. Over time, it can impair the heart’s function. His breathing was significantly impaired and his oxygenation levels were lower than normal. With the original diagnosis in Uganda, we felt we could make the repair in the cardiac cath lab.”
However, diagnostic catheterization at Wolfson Children’s Hospital with pediatric cardiologist Robert English showed that what had seemed to be a straightforward, nonsurgical approach to repair for Francis would have to be reassessed.
“We found that he had a right aortic arch and suspected that a vascular ring was compressing his airway,” said Lacey. “With a vascular ring impinging on his trachea, he would’ve died if he’d gotten one serious respiratory illness.”
Wolfson Children’s Hospital’s new 64-slice CT scanner — which radiologists can use to capture images of a beating heart in five heartbeats, an organ in one second, and perform whole body scans in 10 seconds (twice as fast as conventional CT scanners) — had just been installed and had not been used on a cardiac patient yet. Francis would be the first one.
“In a seven-second scan, we had amazing images of Francis’s aortic arch and could clearly see his trachea being almost completely compressed due to the vascular ring, down to 1-2 millimeters,” said Lacey. “We had our diagnosis and knew he would need surgery.”
Benny had surgery first with pediatric cardiovascular surgeon Eric Ceithaml at Wolfson on April 4. He was back with his host family, Craig and Anne Smith, three days later.
“On Easter Sunday, we went to church, had Easter dinner and both boys did their first Easter egg hunt,” said Craig Smith. “You wouldn’t have been able to tell he had surgery.”
“He has only squatted once since he came home after surgery,” said Lacey. “He is not cyanotic anymore and his oxygen levels are now 98-100 percent, up from 85-88 percent when he arrived. His condition has been repaired and he should have no difficulty in the future.”
Francis had his surgery on April 9, with pediatric cardiovascular surgeon Robert Dabal and was discharged from Wolfson last week. While he still has some upper airway obstruction, it is mild.
“The hope is that his airway will grow normally now that it’s relieved of the vascular ring,” said Lacey.
The boys’ host family, who are members of Samaritan’s Purse host church, Calvary Chapel in Jacksonville, says the boys are a delight and each has a very different in personality.
“Benny is very outgoing and personable, a rambunctious, normal five-year old boy who likes trucks, guns and roughhousing,” said Craig Smith. “Francis is more shy and reserved, but once he warms up, he is very affectionate, a real ‘cuddle bug.’ Now that they’ve both had surgery, they are doing unbelievably well.”
Medical and surgical services were donated by Wolfson Children’s Hospital and Dr. Ceithaml and Dr. Dabal, along with pediatric cardiologist Robert English. Anesthesia and radiology services were donated by Nemours Children’s Clinic. The UF Pediatric Cardiovascular Center is supported in part by the Florida Department of Health/Children’s Medical Services. Travel and other expenses were provided by Samaritan’s Purse.
The boys will be in Fernandina Beach recovering and spending time with their host family until next week, when they will return to Uganda.
Their doctors and the Smiths said the experience has been life-changing.
“It has been amazing,” said Lacey. “When I was in Uganda to screen kids, their families would wait all day for care and were thankful to have the opportunity. Like them, Francis’s mother, Gorreth, and Benny’s mother, Irene, are so grateful for the care their sons have received.”