Two teenage girls from Uganda, both “living on borrowed time” because of a congenital heart defect, received lifesaving surgery this week at Wolfson Children’s Hospital.
Both girls had a condition known as tetralogy of Fallot, which results in a low level of oxygen in the blood and is sometimes called “blue baby syndrome.”
“It’s like always being on Pikes Peak, always being at high altitude,” said Cindy Bonsall, director of the Children’s Heart Project, part of the Christian charitable organization Samaritan’s Purse based in Boone, N.C.
Where a healthy person’s blood oxygen level ranges from 96 percent to 100 percent, Precious Muhawenimana, 15, and Sharifa Kaudha, who turns 15 Sunday, both had oxygen levels of about 80 percent, said Stephanie Lacey, a pediatric cardiologist with Baptist Health. The condition also results in progressive arterial blockage that can cause sudden cardiac arrest.
On Monday, while Precious was still in surgery, Lacey said, “When we look at her images from the operating room today, she had very significant obstruction. She probably didn’t have too much time left.”
In the United States, children born with tetralogy of Fallot typically undergo corrective surgery in the first few months of life.
“Most kids with this condition [who don’t get the condition surgically repaired] don’t live past 12,” Bonsall said. “They’ve been living on borrowed time.”
Precious underwent her surgery Monday and Sharifa received hers Tuesday. Doing Precious’ surgery was Eric Ceithaml. Michael Shillingford did Sharifa’s. Both are professors of surgery and pediatrics at the University of Florida School of Medicine-Jacksonville and are on the staff of the UF Health Congenital Heart Center.
On Wednesday, Lacey said both girls “were recovering nicely.”
The Children’s Heart Project paid for the transportation of the girls, their mothers, a translator and a pediatric nurse from Uganda to Jacksonville and arranged their accommodations.
Providing those accommodations are Andrew and Whitney Gabet, Ponte Vedra Beach residents who were chosen by Christ the Redeemer church to serve as the host family. This is the fourth time the Gabets have opened their homes to families of children brought to Jacksonville for heart surgery by the Children’s Heart Project. Precious and Sharifa, their mothers and a translator have been staying with the Gabets and their four children since May 9.
The medical expenses of the surgeries are covered by Patrons of the Hearts, a partnership between the UF Pediatric Cardiovascular Center at Jacksonville and Wolfson Children’s Hospital. UF and Wolfson donate the cost of inpatient hospitalization and physician services, while Patrons of the Hearts covers the supplies and incidentals for each child.
The organization was founded in 2005 by Jose Ettedgui, UF Health’s chief of the division of pediatric cardiology, and his wife, Hilda. The website www.patronsofthehearts.com lists 67 children brought to Jacksonville for heart surgery since 2005, a total that does not include Precious and Sharifa.
Bonsall said that the Children’s Heart Project has brought more than 1,000 children to the United States for heart surgery since it started in 1997. Fourteen of those children have come to Jacksonville.
“We love our partnership with Wolfson Children’s Hospital,” Bonsall said. She said she particularly was moved that Patrons of the Hearts was willing to “take the children that another hospital wouldn’t accept.”
“The older you are, the higher risk you are,” Lacey said. “But our surgeons are OK with the riskier patients. We decided we were going to take a look at the patients who have been passed over. With this surgery they can really live normal lives.”
For Andrew Gabet, the decision to open his family’s home for more than six weeks to strangers who speak very little English was simply an expression of his Christian faith. “We want them to be alive,” he said. “We want to be servants. We feel so blessed to be a part of it.”
Before surgery, Precious and Sharifa had been to the beach, watched the final round of The Players Championship and attended an AAU baseball game in which Sam Gabet, one of the Gabets’ three sons, was playing. They lazed in the Gabets’ backyard hammock and had their fingernails and toenails decorated by Josie Gabet.
“They love being with my daughter,” Whitney Gabet said.
Ahead for Precious and Sharifa is a visit to Disney World in mid-June, a trip sponsored by Dreams Come True. They are scheduled to fly home to Uganda June 25 and begin living a normal life, something neither has ever known.
Charlie Patton: (904) 359-4413