Nouri

Condition: Ventricular Septal Defect

Hometown:

Four-year-old Nouri was born with a hole in his heart,  a condition that — for babies in the U.S. — usually can be surgically repaired soon after birth. But in Nouri’s home country, Burkina Faso, such lifesaving treatments were not accessible. In fact, the country in West Africa is considered one of the poorest in the world. 

Children with Nouri’s condition, ventricular septal defect, tend to have a difficult time breathing, can become fatigued quickly and do not grow appropriately. For some children, the condition can be fatal. 

A charitable organization that brings children to the U.S. to receive medical care, Healing the Children Kentucky, works with families in third-world countries where complex medical care often is not possible. The organization brings children like Nouri to the U.S. to receive lifesaving care and handles the cost of travel and living arrangements for patients, while Norton Children’s donates the surgery and medical care. 

Nouri was paired with the Kull family as hosts, who brought the boy into their home and accompanied him throughout all of his medical appointments, surgeries and recovery. When the providers at Norton Children’s evaluated Nouri, the care team realized his medical issues extended far beyond what initially was expected.

“Nouri was a special case, because he came over here for a heart surgery, and during pre-op, we realized — oh my — he has a very serious kidney situation, and then he also had a hernia,” said Mark Kull, Nouri’s host father. 

Nouri underwent two separate surgeries. He was treated for his heart condition by the team at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine.

Nouri also had large, adult-sized kidney stones that had reduced his kidney function to half — a very painful condition. The team from Norton Children’s Nephrology, affiliated with the UofL School of Medicine, removed the kidney stones. 

“We knew the details of Nouri’s heart defect. We didn’t know the extent of his other medical issues,” said Smitha Bullock, M.D. , pediatric cardiologist with Norton Children’s Heart Institute. “Everyone was really wonderful, collaborating to help get his total care done. It required multiple specialists and multiple procedures, and we think it will really help him to thrive, and grow, and develop so well, into a normal healthy boy in the long term.”

Nouri celebrated his 4th birthday at Norton Children’s this summer, joined by his American host family and the team of doctors and nurses involved in his care. Nouri had never seen or eaten a birthday cake before, and he enjoyed digging right into his own cake with his bare hands! 

“You never know if he’s going to have an opportunity, even if through something far less in-depth, to pay it forward,” Mark said. “But there’s a human element to it where you’re just … ‘Well, at the end of the day, we might not have solved all of the world’s problems, but for that guy, we solved his problems.’”

Nouri has since returned to his home country and family in Burkina Faso, where he can continue to grow up, healed from his medical conditions and free from the physical pain and discomfort they caused. 

“It’s very rewarding to see them get healthier, and then send them back home to their families, where they’re overjoyed to see such a dramatic change in their whole body and whole condition,” Dr. Bullock said.