But the good news, for Allison and Joe, was that Nadia had arrived at one of the nation's few centers that specialize in the rare illness.
In the last decade, CHOP had treated 64 children with the disorder, including the granddaughter of Fred Biesecker, whose firm makes bottles for the pharmaceutical industry.
In 2001, Biesecker and his family made a substantial 10-year donation, founding a center dedicated to the research and treatment of biliary atresia.
Today, CHOP's Fred and Suzanne Biesecker Liver Center attracts biliary atresia patients from across the nation.
In that way, Nadia was lucky.
Getting a crash course
Those first days at CHOP blurred together for Allison and Joe.
Nadia got another ultrasound. She was given drugs to reduce liquid buildup in her abdomen and lessen the pressure on her lungs.
She had her first liver biopsy. She was sedated so an interventional radiologist using a needle could extract a tiny sliver of tissue for testing.
Even without a microscope it was clear that Nadia's liver was in bad shape. The tissue sample was dark green instead of a healthy purplish pink.
Allison and Joe got a crash course in biliary atresia and its treatment.
They learned about an operation called a Kasai procedure, in which surgeons remove the remains of the damaged gallbladder and bile ducts. A segment of the patient's small intestine is rerouted to allow bile to drain directly from the liver into the digestive tract.
They learned that most children, even after a Kasai, require liver transplants, although some live for years before they need one.
CHOP's lead biliary atresia researcher stopped by Nadia's room on 8 South to enroll her in a major study under way at 10 research hospitals.
CHOP has enrolled more patients in the consortium, which is funded by the National Institutes of Health, than any of the other institutions.
Joe and Allison also learned about liver transplants. And they heard great, almost reverential things, from other parents and staffers on the floor about Rand, the straight-talking doctor who would anchor their baby's care.
They, too, soon came to appreciate Rand, not only for the care she provided Nadia, but for her manner. She came off as a regular person, not an aloof, white-coated doctor.
In fact, Rand never wore a lab coat.
The couple liked that Rand did not talk down to them. Nor did she sugarcoat Nadia's situation.
It was clear to them that the pediatrician was in charge. She exuded a confidence that assured them of her good judgment and skills.
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