Across CHOP's West Philadelphia campus in the Abramson research building, Joshua Friedman planned to use such tissue samples to examine the role of microRNA in the early development of biliary atresia. Such basic science could one day lead to nonsurgical treatments for the disorder.
In the operating room, Nance pressed on.
He shaved a thin layer of cells off Nadia's liver where the bile ducts had emerged, the portal plate. He then cut through her small intestine and attached the lower segment to her liver so the bile would drain directly into her small intestine.
Next, Nance connected the upper segment of her intestine to a spot below the new connection to create a Y-shaped structure - called a Roux-en-Y (pronounced ROO-in-why). That would let bile drain from the liver while food would continue to pass from Nadia's stomach through her digestive tract.
If the procedure worked, it would prevent further damage to Nadia's liver and enable her to process food and vitamins normally.
At 8 p.m., 5 1/2 hours after he started, Nance completed the procedure. He closed the incision in Nadia's abdomen, and she was transferred to the pediatric intensive care unit (PICU) on the seventh floor of the south tower.
Allison and Joe stayed with Nadia day and night, eating at McDonald's and taking time off from work. Allison and Joe slept on a couch and roll-away bed beside Nadia's hospital crib.
It would take six weeks to learn if the procedure had worked.
An emergency return
After five days in the PICU, Nadia was ready to leave intensive care.
As Allison and Joe settled into their new room that Sunday evening, Nadia squirmed and cried in their arms. Nothing seemed to calm her.
Something was wrong. And when they changed Nadia's diaper the terror they'd experienced in the ER two weeks earlier came rushing back.
Nadia's bowel movement was black, like congealed blood.
Rand was the attending on-call that weekend. Reached at home, she immediately ordered a tap of Nadia's abdomen to examine the fluid that had collected. At 4 a.m. the bedside paracentesis showed that formula and stool were loose in her abdomen.
She needed immediate surgery.
At 4:45 a.m. Nadia arrived in the operating room for the second time.
Surgeon Alan Flake reopened the healing wound on the little girl's stomach. He found a leak where Nadia's intestine had been stitched together during her Kasai.
He cleaned her out and spent the next two hours redoing the intestinal connection. It was an uncommon complication likely resulting from Nadia's poor health.
It was a setback.
Nadia would spend the next two weeks back in the PICU. She developed several problems, including a serious, difficult-to-control bacterial infection.
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