Thanks To Rangers And Others, Kosovar Girl Has A New Heart

European Stars and Stripes | June 26, 2002 | Sandra Jontz

[Stand Watch Listen]

PHILADELPHIA — Life for 9-year-old Fjolla Sylejmani is more than just about growing up.

She wants to grow old.

The young Kosovar girl just might have been given that chance thanks to a lot of folks looking out for her.

On Thursday, the curly-haired blonde "with a winning smile" got long-overdue surgery to repair a hole in her heart that threatened to cut her life short, said her cardiologist, Dr. Jack Rychik.

It had robbed the girl of her childhood.

"Before the surgery, I feel myself tired," she said Monday morning while recuperating in the sixth floor of the cardiac intensive care unit of Children’s Hospital in Philadelphia.

"Running, walking, I couldn’t play with the other kids," she said in Albanian, with her father, Qamil Sylejmani, translating.

Physicians knew of the hole about the size of a quarter in her heart but were surprised to find Fjolla has no pulmonary artery leading to her left lung, they said.

What really wowed them was the lack of damage to her left lung.

For nine years, her heart has been pumping two to three times harder than normal to compensate for the hole. Multiple small blood vessels led from the heart to her lung to make up for the lack of an artery.

"We like to do [this procedure] when they’re young and before there is any damage to the lung," said pediatric cardiac surgeon Dr. Bill Gaynor. "She didn’t have any damage. Her heart beat more and her body made up for it."

And while Thursday’s surgery was a success, when surgeons closed the hole with a cloth patch, Fjolla might not be totally healed and could experience complications in the future, Gaynor said.

Rarely do they perform this type of procedure on children as old as Fjolla, Gaynor said. That is largely because children with this problem, called ventricular septal defect, don’t live that long.

"So many of my patients are great, strong kids who beat the odds," he said. "This is why we do it. Our whole goal is to give them a life as normal as possible."

And saving a child can potentially mean giving him or her 60, 70, even 80 years of life, Rychik said. "We make a tremendous difference. When we fix a kid’s heart, we’ve created a potential for a full life."

Strangers from around the world pitched in to help Fjolla, said philanthropist Bill Brill, an Annapolis, Md., resident who has collected money from U.S. folks from Kosovo to Afghanistan, Guam and Germany.

Fjolla’s plight came to light when members of the police force of the United Nations Mission in Kosovo, or UNMIK, learned of Fjolla’s condition from her father, who works a translator at the office Urosevac, which Kosovar Albanians, and Qamil, refer to as Ferizaj.

Word spread, and soon a group of former U.S. Army Rangers started contributing money. One contacted Brill, who called several U.S. hospitals to see if any would donate their services.

Children’s Hospital in Philadelphia offered the typically $100,000 surgery for about $20,000.

When not at the hospital, Fjolla and her father stay at Brill’s home, playing on the computer or working out math problems.

They will be in the United States until July 14, give or take three or four days, Quamil said.

There is much Fjolla wants to do upon returning home, her father said. She has four sisters and a 9-month-old baby brother with whom she wants to play. She adores soccer and wants to play. She has lots of friends she hasn’t seen in a while.

But what first?

"For now, I don’t know what I will do first," said the timid girl who barely uttered a word during an interview at the hospital.

She walked Sunday for the first time since her surgery, a few paces up and down the white and gray tiles of the cardiac intensive care unit.

"And she stood up [and moved] from the bed to the chair," her father dutifully reported to Rychik as he made his Monday morning rounds.

Fjolla and her father flew from Kosovo to Vienna, Austria, before jumping on a nearly 10-hour trip to Dulles International Airport outside of Washington, D.C. (Fjolla then got carsick sitting in the area’s infamous rush-hour traffic.)

When asked what she was thinking of during the flight, what she felt, Fjolla sqeaked out: "I was a little scared."

Of what? The plane ride?

"The surgery."

Since arriving in Philadelphia on Tuesday, Fjolla has asked her father one question repeatedly.

"She wants to see the bell, the one that was rung only once," he said, smiling.

He’s promised to take her to see the Liberty Bell.