Nicolas and Marta Sanchez were worried. For two days, their 10-year-old daughter, Raquel, had been running a fever. Now she complained of irritated eyes, a flushed face, and a cough. Watching her chest rise and fall, her parents counted 22 breaths per minute, a bit faster than normal. This was no ordinary cold.
Raquel's history gave them plenty of reason to worry. She was their miracle child. Ten years earlier, she was born full term with a lusty cry— and with skin and eyes the color of maize. Don't worry, the doctors had said, lots of newborns need a day or two under lights to help clear excess bilirubin— a component of bile— from the blood. Nicolas and Marta had waited patiently. But unlike her nursery-mates, Raquel stayed yellow.
Soon Raquel's doctors squirted dye into her veins in order to scan her liver and gallbladder for signs of disease. Then their looks turned grave. The high level of bilirubin was not caused by broken-down hemoglobin from a mother-infant blood reaction. The accumulation was a result of malformed liver ducts. Biliary atresia, they called it.