Iqra Wazeer had spent half of her nearly three years waiting for a new liver.
Hers was damaged, the result of failing bile ducts. Without a replacement, doctors said, she likely wouldn't survive.
Muhammad and Parveen Wazeer sought help for their little girl at two local hospitals before being directed to Johns Hopkins, where five children under the age of 5 received new livers last year. Iqra was put on a waiting list at the Baltimore medical center.
Then last spring, a pediatric liver transplant program started at Inova Fairfax Hospital, one of a few facilities in the region, doctors say, that have revamped their programs to perform the specialized surgery on the very young.
Two weeks ago, Iqra became the region's youngest liver transplant recipient, as well as Inova's first liver transplant patient under age 16.
A week before the surgery, doctors at Georgetown University Hospital did a liver transplant on a 12-year-old girl from Olney, that hospital's youngest such organ recipient. Doctors there say children much younger are on its waiting list.
"Up until recently, kids in the D.C. metropolitan area have been going to Baltimore and even farther out -- to hospitals in Philadelphia and Pittsburgh and Delaware -- because . . . transplantation for young children hasn't been widely available," said Amy Lu, who was recruited in 2000 to revise Georgetown's pediatric transplant program. "The families have had to struggle to go elsewhere," she added.
Nationwide last year, 510 people under age 18 received liver transplants, according to the Organ Procurement and Transplantation Network. Fewer than 200 were under age 5.
According to medical literature, 55 percent of children born with liver disease will die before their third birthday unless they receive a transplant.
James Piper, director of liver transplantation at Inova Fairfax, helped pioneer pediatric liver transplantation in the late 1980s and early '90s at the University of Chicago Hospitals.
"You have to do it young" to help these patients, said Piper, who joined Inova a year ago to revamp its transplant program. Already, he said, the hospital is getting calls from families as far away as Europe seeking help.
Previously, young patients in this area needing liver transplants have gone to large programs, such as those run by Hopkins, the Medical College of Virginia in Richmond and the University of Virginia Health System in Charlottesville.
Surgeons at Howard University Hospital performed a successful liver transplant on a 13-year-old boy in 1992. Today, that's like operating on a small adult, Piper said, adding that until a facility can "offer transplants to all children, from birth . . . you don't really have a pediatric program."
Iqra's care was transferred to Inova Fairfax last March, just as its liver transplant program began taking patients. She was hospitalized in November with complications and stayed three months -- her mother sleeping by her side each night -- until a suitable organ became available. During that time, doctors treated her condition, biliary atresia, and its inevitable nutritional and developmental problems.
Piper said the disease's effect on the body is analogous to building a house without sewer pipes. Toxins were trapped in Iqra's liver, causing her skin to turn orange, halting her growth and weakening her bones.
It was 5 a.m. on Jan. 28 when Parveen Wazeer got the call from the transplant coordinator telling her that a liver had become available.
"I was so happy," Parveen Wazeer, who lives with her husband and children in Reston, said last week as she held her daughter in her lap. "It was going to happen."
The cadaveric liver came from out of state, donated by the family of a 6-year-old boy. Because the liver was from a much larger child, Iqra's abdomen was greatly distended after the 3 1/2-hour surgery. But livers shrink to fit, and within three days Iqra's new liver was reduced in size by a third.
Laying on her hospital bed a week after the transplant, Iqra no longer resembled the sick girl pictured in photographs taken just weeks before.
Piper patted Iqra's stomach, smoothing her shirt over a massive abdominal scar.
"It's hard to believe it's the same girl," he said, smiling.