The toddler's dry, cracked lips had taken on a blue tinge that Monday morning. In fact, Nadia Kadi's normally light-olive skin was a darker, bluish hue.

Her parents brought her to Children's Hospital of Philadelphia for a routine checkup. But when liver specialist Elizabeth Rand saw the little girl, she immediately knew there was a problem. Rand examined her, and then turned to Nadia's worn-out parents.

Nadia needed to be readmitted.

As Joe and Allison Kadi waited for a room on 8 South, the ward at CHOP where kids with severe liver disease are treated, Nadia fell asleep in her father's arms.

Her breathing grew ragged, and she turned an even more alarming shade of blue.

Holding his daughter in the hallway, Joe wished her doctors could see Nadia now as she struggled for air.

He looked up. His wife, Allison, was walking toward him with Dan Leung, a young doctor in advanced training, who she had bumped into in a nearby corridor. Allison had asked the doctor to come check on her daughter.

"I don't like that at all," Leung said. "I think she needs to go to the ER."

But the Kadis wanted her on 8 South. They knew everyone on the 24-bed ward from the months they had already spent there during Nadia's illness.

A nurse rushed over from the nursing station to help. She placed a palm on Nadia's forehead.

"Oh, she's hot, too," she said.

Leung considered his options. Nadia needed oxygen now.

A nurse found a portable oxygen tank and mask. Another grabbed an electronic thermometer from a nearby room. A third paged an IV team. Meanwhile, a second housekeeper was sent to speed the cleaning of Room 16 for Nadia and her parents.

Joe woke his daughter and held her protectively as Leung connected the oxygen and a nurse took her temperature. Nadia cried. Her mother stood three feet away, her head down, crying, too. She could not watch, nor could she turn away.

On the way up to the eighth floor, Allison had laughed ruefully at a sign proclaiming Nurses Week. The Kadis had been here for Nurses Week 2006.

Last year, Allison and Joe had been here with Nadia praying - as they were doing now - that the people at CHOP would save their little girl.

But last year, it wasn't a blue tinge that had landed them in the hospital.

Last year, Nadia had been yellow.

Rendezvous at the ER

First-time parents, Joe and Allison Kadi felt they had asked about the yellow tone of Nadia's skin and eyes a thousand times. The Doylestown couple were repeatedly reassured the baby was fine.

But by 5 months of age, Nadia's stomach had become so engorged that her skin looked almost translucent and her belly button protruded half an inch. Her arms and legs were thin and wasted.

Nadia's doctor sent her for an ultrasound at Doylestown Hospital. Joe took Nadia for the test on April 24, 2006. It was a Monday, his day off from his job as a team supervisor at Annie Sez in Doylestown.

It was there, at the women's clothing store, where nine years earlier Joe, now 41, met and fell for Allison, now 31. She worked there part time, for the discount. Joe, who emigrated to the States from Tunisia, knew right away that she was the woman he wanted to marry.

Allison's passion grew more slowly. They became close, the friendship lasting more than two years before she agreed to a real date with Joe.

They were married on Joe's birthday, Sept. 1, 2002. Both hoped for a big family. Three years later Nadia was born.

That Monday, Joe took Nadia to the hospital for her ultrasound while Allison ran to the airport to pick up her parents, who were returning home after a trip to Italy.

The ultrasound revealed a problem. Nadia needed to be checked out by experts at CHOP.

The sooner, the better.

Joe wasn't worried. He figured Nadia would get some medicine and they would all be home later that day. He was more concerned about finding the children's hospital in the city.

Joe hadn't fully understood all the medical terms the doctor had thrown at him - English was his fourth language after his native Arabic, then French and Spanish. Nor did he fully grasp the implications of being sent to Children's Hospital of Philadelphia.

So he didn't call Allison.

But when she arrived at the airport, she gave him a call. He hesitated, then told her that he was taking Nadia to CHOP. Joe quickly handed the phone to Nadia's doctor, who was giving him directions to the hospital.

Allison was scared. She had grown up in Doylestown; she knew something must be seriously wrong for the doctor to send Nadia to CHOP. She couldn't process anything after hearing "fluid in her abdomen."

It was 4 p.m.

As Joe headed for the hospital, Allison paced outside the security cordon in the international terminal, fighting back fear. And guilt.

How sick was her baby? How could a mother miss an illness serious enough to send her child to CHOP?

Nadia was so easy. She never cried a lot or gave Allison reason to think she was in pain. But her baby didn't like sitting up, and complained when put in the car seat.

Like all new parents, Allison and Joe were learning on the job. She felt like they had failed a basic test. Tears rolled down her face as she waited for her parents.

Allison was not very religious, but she believed in God. She prayed.

A half-hour later, with her parents in tow, she arrived at the hospital before her husband.

He got there at 5:10 p.m.

The entire family was immediately caught in the bustle and swirl of the emergency room on a busy Monday night.

A deadly discovery

Nadia was one of nearly 76,000 children to pass through CHOP's ER in 2006. The doctors and nurses treat everything from sprains and sniffles to gunshot wounds, failing hearts, infectious diseases and brain tumors.

Even so, Nadia was unusual, a jaundiced 5-month-old with apparent liver disease. She seemed too old for the problem her symptoms suggested.

In a tiny triage area behind the waiting room, a nurse assessed Nadia's condition as "acute," the second-highest level, due largely to her breathing difficulties.

Nadia was quickly moved to a treatment room and assessed again, first by a resident and then by two physicians. They drew blood and took an X-ray.

When a nurse inserted an IV, Joe realized it was going to take more than a couple of pills to set his baby right.

Allison and Joe did their best to answer the questions flying at them while tracking what was done to Nadia.

When did you first notice the yellow in her eyes? How long has her stomach bulged like that? Was her breathing always this labored?

Nadia had been yellow for months. Allison wondered: Should they have caught this sooner? Could they have prevented her baby's illness?

The doctors reviewed the ultrasound. Nadia had an enlarged spleen and liver, high pressure in her liver's portal veins, and fluid buildup in her abdomen.

The X-ray came back. It showed the low volume of Nadia's otherwise clear lungs. That accounted for her troubled breathing.

The tests were ruling out problems: No heart ailment. Clear lungs. No evidence of serious infection.

Then, in the small ER treatment room with barely enough space for the Kadis to stand on one side of Nadia's gurney, Allison looked over at the female resident checking her baby.

Was the young doctor crying? Oh, God!

"What's wrong?" Allison demanded. "Why are you crying?"

The resident denied she was upset. But when Allison pressed her, the resident reluctantly looked up at the young mother.

Her liver is failing, she said.

Allison began to cry. She left the room to tell her parents. Before long, they were all in tears.

Within minutes, the story changed yet again. A more senior doctor appeared to talk to the family.

Nadia wasn't going to die, the doctor said, not that day. But she was seriously ill with advanced liver disease. Still, she was at the best possible place for a child in her condition.

Like the sickest 15 percent of the children who come to CHOP's ER, she would be admitted.

Nadia was going to 8 South.

At 9:47 that night, more than 4 1/2 hours after getting to the ER, the Kadis arrived on the liver ward for the first time.

Their small room was quickly crowded. In addition to Nadia's parents and grandparents were a bedside nurse, the attending physician, a fellow, a resident, a medical student, and Noelle Bates, the nurse practitioner who helped coordinate the care of patients on the ward.

While Nadia's parents and grandparents focused on the doctors, trying to understand what was happening to their baby, Bates picked Nadia up to ease her breathing.

Nadia stopped crying and fell asleep in her arms. Bates, 30, wouldn't forget that moment - how Nadia, whose stomach was too distended to be held like a healthy baby, felt in her arms.

The baby girl, with her curly brown hair and big brown eyes, stole her heart, and would soon do the same to the other staffers on 8 South.

A problem missed

Elizabeth Rand, a senior liver specialist, often hears the unusual stories through the hospital grapevine. Residents and fellows want her to weigh in on the complicated cases.

That's how she heard about Nadia. Clearly, the child should have been referred to CHOP months earlier. The staff was sympathetic toward the young parents. They seemed like nice people who had tried to do the right thing. Rand, 44, knew most doctors never saw a case like hers. It was unusual.

Rand had trained at the University of Chicago and the Johns Hopkins School of Medicine. A native of New York, she had come to CHOP to do research, but the pull of real patients was a strong one. In 1998, she became a full-time clinician.

Nadia's story made her angry and frustrated.

But in the end, she just felt sorry for the parents, and sorrier still that the opportunity to treat the child sooner - when the likelihood of a good outcome was significantly better - had been lost.

She and the rest of Nadia's team of doctors suspected biliary atresia, a disorder that afflicts one in 10,000 children. The condition destroys the bile ducts, which causes liver damage. Without treatment Nadia would likely die by her second birthday and certainly by age 3.

Biliary atresia is typically diagnosed within a month or two of birth. Nadia got to CHOP very late.

Her liver already showed signs of cirrhosis.

Rand couldn't predict whether the delay would change Nadia's prognosis, but studies showed that the earlier it was found, the better the kids fared. Even then, half of all the kids with biliary atresia require liver transplants by their second birthdays.

It was hard to predict what would be involved in saving Nadia. Rand knew medicine was imprecise, that survival often boiled down to a person's luck as much as their biology.

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.

She gave them hope that Nadia would one day be well.

Mapping a surgical path

While Nadia and her parents were settling in, the liver center's senior staff met to discuss her case.

They had two options: Put the child on the waiting list for a new liver and prepare her for a transplant, or perform a Kasai, which might allow her bile to drain and give her liver time to recover.

Both courses carried some risk. Though rarely, children still die waiting for a transplant. And Kasais are major operations with inherent dangers.

Several doctors argued that a Kasai was unlikely to succeed given Nadia's age and the advanced state of her disease. Better to spare her surgery now and prepare her for a transplant.

Rand, medical director of CHOP's liver transplant program, and others argued for trying a Kasai.

The risk of the operation in the hands of CHOP's experienced surgeons was minimal. If it didn't work - Kasai procedures are unsuccessful in 40 percent of patients - Nadia would go on the transplant waiting list.

Either way, Nadia would get a feeding tube and extra vitamins to help her gain weight, size and strength in preparation for a transplant. Rand would give Nadia's parents the special vitamins she kept stashed for patients in a cabinet over her desk.

"There was the possibility that this could work well for her," said David A. Piccoli, director of the liver center and chief of the division of gastroenterology and nutrition at CHOP. But, he said, the prognosis was not as bright as it would be if Nadia were younger and her liver not as severely damaged.

In medicine, experience counts. Two surgeons at CHOP perform all the Kasai procedures. Each does four or five a year, more than most surgeons do in three years. And as with many complex operations, the more Kasais a hospital and a surgeon perform, the better the outcomes.

In the early afternoon on May 2, eight days after she arrived at CHOP, Nadia was taken from her room on 8 South to the fourth floor, for surgery.

Joe and Allison went with her. They stayed by her side until the anesthesia took effect and she was wheeled into the operating room.

At 2:30 p.m., surgeon Michael Nance made a small incision on the right side of Nadia's abdomen an inch or so under her rib cage.

Wearing magnifying glasses to help him see the tiny vessels, Nance located the remnant of Nadia's gallbladder and injected some dye to check for bile flow.

The dye didn't move.

Nance next traced the bile ducts from the gallbladder up to the liver and down to the connection with the intestines. He widened the incision, releasing fluid that had built up in Nadia's abdomen.

The surgeon could see Nadia's liver was in bad shape. It looked dark green, its surface bumpy - clear signs of cirrhosis.

After a second injection of dye - this time directly into the ducts to double-check for any flow - Nance removed the girl's damaged gallbladder and bile ducts.

That tissue was preserved for testing and research.

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.

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.

That's when it hit them. A liver transplant.

Allison and Joe broke down and cried.

On the waiting list

On Aug. 16, Nadia Kadi was placed on the waiting list for a donor liver. Her condition was serious, but not severe enough to merit an urgent status on the list.

Nevertheless, Allison and Joe were given a beeper and instructed to be prepared to return to the hospital at a moment's notice.

Joe hoped to act as a living donor, to give a portion of his liver to Nadia. Allison wasn't a match. Besides, she was pregnant.

In the end, tests showed that Nadia's main portal vein was blocked. That meant Nadia would require too much of the donor's vein to make living donation possible.

So they waited, and they prayed for the beeper to go off.

At CHOP, Rand waited, too. She held office hours two days a week, made daily rounds on 8 South, conducted research, wrote and directed the fellowship program for the division's 12 young doctors, and met myriad other duties as medical director of the liver transplant program.

Even when she was off, she wasn't. She was routinely consulted by the on-call team and often paged at night and on weekends. And when one of her patients had a transplant, the rest of her schedule flew out the window.

She was a busy woman. Too busy, sometimes.

In the early fall, Rand half-noticed a slight change in her left breast. Over time, the growth became more pronounced. When she stopped and focused on her own body, Rand knew she had breast cancer.

She acted quickly.

She went for a mammogram at 7 a.m. the next Monday. Several hours later she was paged and ordered back for further testing. Tuesday, she had a biopsy. Wednesday, the cancer was confirmed.

A second biopsy the next week revealed the cancer had spread to her lymph nodes.

This was serious. It was out of her control. And that scared her.

She met with a surgeon and an oncologist to develop a treatment plan. Chemotherapy first, followed by a mastectomy on her left breast. Radiation if necessary.

Rand would undergo a 16-week chemotherapy regimen. It began the Monday after Thanksgiving.

She didn't want to ruin the holiday for her kids, Ellie, 10, and Isaac, 6.

She would get a dose of powerful drugs every other Monday for nearly four months.

Her doctor's goal was to shrink the tumors before her surgery.

Rand wanted to keep working as much as possible. She would continue office hours on the weeks she didn't have chemo and work from home when she couldn't come in.

But like her liver patients, Rand was now more susceptible to infections. She contracted pneumonia, throwing off her plans for two weeks.

Even so, she stayed engaged. She got daily updates on her patients from the team on 8 South and dispensed orders for their care. She worried that she was adding to the burden of busy colleagues while she sat at home.

She was bored.

Rand had plenty of time for paperwork and contacted patients via e-mail. She went in for her outpatient clinic as much as her treatment allowed.

Those were her best days. At CHOP, she snapped out of the surreal nightmare of her illness. At CHOP, she could feel connected to her world - to her patients.

By Nadia's next checkup, Rand's hair was gone. She didn't wear a wig. It felt too much like hiding.

The doctor demanded a lot of her patients and their families. She figured the least she could do was be open with them about her illness.

She remained her cheerful, optimistic and upbeat self, despite private fears for the future.

Joe and Allison worried. They liked and depended on Rand. She embodied CHOP and their hope that Nadia would be cured.

Would Rand be OK? Was she going to take time off? Would she be there when Nadia got her liver?

The long-awaited call

There was little to cheer about on Christmas Day at the Kadis.

Nadia, Allison and Joe had been waiting for a liver for weeks.

Nadia was listless. Allison and Joe grew worried that she seemed so out of it, but she didn't have a fever.

The next day, however, her temperature spiked. The doctor on call told them to take Nadia to the emergency room at Doylestown Hospital.

It was serious.

Nadia had a bloodstream infection. It was E. coli.

At 3 a.m. an ambulance rushed Nadia to CHOP, where she was started on an array of antibiotics - Unasyn, Zosyn, Ciprofloxacin, imipenem and fluconazole.

The Kadis were back on 8 South.

There is nothing quite so lonely, or terrifying, as watching over a sick child in a hospital.

Nevertheless, the Kadis found kindred spirits on the ward, other parents standing vigil over children stricken by life-threatening illnesses – several with biliary atresia.

They made friends there. The 8 South staff, and many of those other parents, were soon like family.

The days turned into weeks. Rand and the rest of the liver team tried to track down the source of the recurring infections even as they requested Nadia get a higher status on the transplant waiting list.

Rand needed to maintain a delicate balance. Nadia couldn't have a transplant until the infections were controlled, but her damaged liver left her particularly susceptible to bacteria.

Finally, abdominal CT scans showed Nadia had pockets of fluid collecting in her abdomen. Using needles, doctors tapped the deposits and found the E. coli hiding there.

By late February, Nadia was better. Rand sent the family home. They had been in the hospital for 10 weeks.

The cost of Nadia's care so far was $259,170. The family had private insurance, but because of the severity of Nadia's medical problems, Medicaid would cover any gaps in coverage.

On March 1, Joe drove Allison and Nadia home.

Allison was in her 37th week, and the running joke with her friends at CHOP was that Nadia would get her liver the day her mom went into labor.

On April 2, Allison went to Doylestown Hospital to give birth. She was a week late, so her doctor tried to induce her. It didn't work, and her doctor tried again the next day.

Still, it didn't take.

That evening Allison and Joe turned on their TV as they got ready to spend the night in the hospital. Nadia was asleep at her grandparents' house in Doylestown.

At 10 p.m., Allison's cell phone started to ring. Joe answered. It was Kate Anderer, the liver transplant coordinator at CHOP.

Nadia has been offered a donor liver. She needed to come in to CHOP.

The sooner, the better. 

Contact staff writer Josh Goldstein at 215-854-4733 or jgoldstein@phillynews.com.

Coming Monday: Another chance for Nadia