But Nadia healed and was back on 8 South on May 24.
For Rand, Nadia's experience changed how she calculated the risks and benefits of Kasais. A year later, Rand would argue against performing the procedure on a 4 1/2-month-old girl from Florida.
She wouldn't take that risk.
Back on 8 South, Nadia was given a feeding tube to ensure she took in enough calories. Joe learned how to insert and remove the tube so they could continue nightly feedings when they returned home.
On Tuesday, May 30, five weeks after the Kadis first arrived at CHOP's emergency room, Allison and Joe took Nadia home.
She was still yellow, but they had hope.
Back home, good news
At first Allison and Joe felt strange sleeping in their own bed, cooking their own meals, and eating at a table. There were no CHOP doctors, nurses or other staff to help out, to measure doses, to monitor Nadia. It was scary.
But soon it was all routine.
Allison and Joe made the hour-long drives to CHOP for Nadia's checkups every two weeks, then once a month.
Mostly they waited and they worried and they prayed. They waited to see if the Kasai worked. They prayed Nadia had been cured. And they worried about infections that would send Nadia back to CHOP; they took her temperature obsessively.
At the end of July, the Kadis got some good news: Allison was pregnant.
Before Nadia had been discharged, the couple asked whether there was a danger of passing on biliary atresia to their other children. Rand assured them that there was little chance, since Nadia had a nonhereditary form of the disease.
Still, just to be sure, when Allison learned she was pregnant she quickly e-mailed the doctor.
Rand was excited and reassuring. The doctor thought it was great that they were moving ahead with plans to have a big family. Often parents of sick kids are hesitant to get pregnant again.
Unfortunately, the medical reports that summer weren't all that good.
In mid-August, Allison and Joe took Nadia to CHOP for her monthly checkup. They got there early so Nadia's blood-test results would be back by the 10 a.m. appointment.
Rand broke the news gently. Nadia's numbers were OK, but not great. The Kasai hadn't worked. It was time to put Nadia on the waiting list for a liver transplant.
Allison and Joe were speechless. They had hoped the Kasai would give Nadia years, not months. They had heard that some patients did well for 20 years or more before getting a transplant.
After Nadia's appointment, the couple took her to the hospital's basement cafeteria while her many medicines were refilled.
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