Like many kids, Lis Spahiu loves wearing his Boston Celtics and New England Patriots t-shirts. His mom, Zana, jokes that sometimes she needs to hide them so he’ll wear something else. But Lis isn’t a typical Boston sports fan. This 5-year-old from Kosovo has grown to love Boston, and its sports teams, after several trips to the Boston Children’s Hospital to receive life-saving care for his heart.
“In Kosovo, the health care system is very poor,” explains Lis’s mom Zana. “So when Lis contracted Kawasaki disease at 5 months old, he was misdiagnosed.”
Kawasaki disease causes inflammation of the blood vessels. When caught and treated early, most children recover without any lasting problems. But when diagnosis is delayed, Kawasaki disease can cause long-term damage to the coronary arteries that supply blood to the heart.
A late diagnosis leads to larger problems
“After a month, he still wasn’t feeling well, so we took him to Belgrade because the doctors in Kosovo didn’t have any answers,” says Zana. In Belgrade, Lis was diagnosed with Kawasaki disease and was given intravenous immunoglobulin (IVIG), the standard treatment.
But they hadn’t caught it in time.
“Giant coronary arteries had formed and he had clots in his left descending artery,” says Zana. This meant Lis required more IVIG treatments and frequent follow-ups to check on his arteries. Since this care was not available in Kosovo, the family continued traveling to Belgrade for treatment.
Frustrated and wanting to learn more about her son’s condition, Zana started doing her own research online. She found the Kawasaki Disease Foundation and wrote to them about Lis. The next day, she got an email from Richard Xia, a volunteer and Kawasaki disease survivor from Kansas. He put the family in touch with Dr. Jane Newburger, director of the Kawasaki Disease Program at Boston Children’s.
Finding a dream team of providers
Zana recalls, “When I found Dr. Newburger and Boston Children’s online, I thought, ‘If I can get Lis here, it would be a dream come true.’ I saw that the hospital was one of the best in the world.”
Newburger responded right away. She recommended they take him to a doctor in Switzerland for a computed tomography (CT) scan, and then send a copy of the images to her. They followed her advice.
“Once Dr. Newburger saw his images, she thought it would be best for her team to see him in Boston,” says Zana. “At the time, I didn’t have much hope we would be able to travel all the way to another continent, but Dr. Newburger worked hard to help make this happen. When we found out we could go, I was so happy I started crying.”
The family packed up and traveled to Boston in September of 2015, not knowing exactly what type of treatment Lis would need. But after Newburger and her team met Lis and ran more tests, they decided bypass surgery was the best option.
“They told us his left anterior descending artery was almost closed and his heart function under stress was not good,” says Zana. “Because Lis was very high risk, he needed surgery right away,”
A successful surgery
Four days after their arrival in Boston, 3-year-old Lis had bypass surgery, performed by Dr. Luis Quinonez, a cardiac surgeon at Boston Children’s.
“Dr. Quinonez told us he was one of the youngest patients for bypass surgery,” says Zana. “I kept thinking how lucky we were to be able to bring him here at the right time.”
The surgery was successful and Lis was cleared to leave the hospital after seven days. But the family wasn’t ready to leave Boston.
“That first trip we stayed for a month and a half,” says Zana. “We didn’t feel comfortable leaving right away because we didn’t have care for Lis at home. We wanted to be sure everything was fine before we left.”
Since that time, the family has made yearly trips to Boston to check on Lis’s two other damaged arteries. During their most recent trip, in August, Lis’s test results looked good. Zana and her husband, Fatmir, were relieved.
“We know there’s a chance he may need more surgery in the future, but for now, we’re just watching and waiting,” says Zana.
In between visits to Boston, the family travels to the Former Yugoslav Republic of Macedonia (FYROM) for echocardiograms. All the traveling isn’t easy, but it’s a price the Spahius are willing to pay to make sure Lis gets the best possible care for his heart.
“Our lives are our children,” explains Zana. “When we are in Boston and Lis is in Dr. Newburger’s care, I am at my happiest. Dr. Newburger and Dr. Quinonez saved my child and I don’t have words to express my gratitude. We plan to come back for his care as long as we can.”
Lis seems fine with that plan — each trip offers a chance to collect more Boston sports memorabilia and practice his English, which is already quite good. Because of his heart, Lis can’t play contact sports himself, but he loves going to the playground and running after his older brother, Mal. He also started swimming this year.
“He’s a very happy kid, and thanks to Dr. Newburger and the team at Boston Children’s, we’ve really had a happy ending,” says Zana.