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Since birth, she's fought to live

Little Hailey Warren was diagnosed with a rare liver disease three months after she was born. Now, after two liver transplants, she is catching up fast on all the basic baby things she missed while sick.

By PHIL DAVIS
Published November 29, 2005

	[Times photo: Zach Boyden-Holmes]
	Eleven-month-old Hailey Warren gets a kiss from her brother, Alex, 2, at home in Dunedin. The family moved there recently from Port Richey. Adrienne Warren, 22, quit her nursing job after Hailey was diagnosed with biliary atresia, which affects the liver.
	Joe Warren plays with daughter Hailey at their home. During Hailey's illness the family split its time between her grandmother's Port Richey home and the Ronald McDonald house in Gainesville, near Shands hospital.
	[Warren family photo]
	Hailey lies in a bed in Shands Children's Hospital, surrounded by tubes. The scar on her stomach is from one of her two liver transplant operations.

"Come back to me. ... Please don't leave yet. I need you Hailey!"

- Adrienne Warren's scrapbook for her infant daughter, Hailey, July 2005

Adrienne Warren never said goodbye.

Her 6-month-old daughter's liver was wrecked by a rare disease. Little Hailey Warren's kidneys were failing. Her skin and eyes were so jaundiced, the baby's yellowish hue reminded relatives of a bar of Dial soap. Intravenous tubes pumped food and medicine into her tiny body.

Doctors told Hailey's parents, who recently moved to Dunedin, that she needed a new liver. Right away. "They never said she would die or might die," Adrienne Warren said of Hailey's medical team at Shands Children's Hospital in Gainesville. "They just said they would do everything they could to keep her alive."

Time was running out.

Hailey's bilirubin level provided a running score. Bilirubin is a waste product left over when red blood cells die. High levels of bilirubin are a sign the liver's bile ducts aren't removing waste from the body. Normal bilirubin is zero. Jaundice begins at 2.5. Hailey's was peaking at 58.

It was Aug. 2. No donor livers were available.

Her surgeons said she was within 48 hours of being too sick for a transplant.

"Every day broke my heart because you became skinnier and sicker and I couldn't do anything except LOVE you and pray God would not take you away."

- Hailey's scrapbook

Doctors weren't too worried about Hailey's slightly yellow color when she was born on Dec. 14, 2004. She seemed like a healthy 6-pound, 15-ounce baby.

It took three months to make the diagnosis: biliary atresia, a rare, serious condition that causes bile to back up in the liver instead of going into the intestine and safely out of the body. The caustic bile scorched her liver until it was beyond repair.

The condition affects one in 15,000 newborns, but it is the leading cause of pediatric liver transplants.

Surgeons at All Children's Hospital in St. Petersburg tried a procedure called a kasai to help the liver drain, but it didn't work. Hailey was too old.

Adrienne Warren, then 21, gave up her job as a nurse at an assisted living facility. Hailey needed constant care. The baby ended up spending about two weeks in the hospital and then two weeks out as her body fought infections.

Hailey went on the transplant list May 16. Eighty-five infants were on the list with her.

She was admitted to Shands on June 24 and by June 29 was moved to the Pediatric Intensive Care unit. Infections continued to sap her strength.

On top of the fear and anxiety caused by Hailey's declining medical condition, Adrienne and her husband, Joe, waited, knowing that somebody else's baby would have to die to save Hailey.

Surgeons needed an infant's liver. Hailey was too small for anything else.

"We have a liver. ... I could barely believe it. At first I cried because a baby died. Then I was overjoyed because they gave you the gift of life."

- Hailey's scrapbook, Aug. 2.

The liver came in the nick of time. Doctors confirmed it was on its way at 10:30 p.m. Aug. 2.

"If we hadn't had a liver that day, we would not have transplanted her the next day," said Dr. Alan Hemming, one of Hailey's surgeons at Shands. "She would have died."

The transplant on Aug. 3 went well. Hailey's yellowish hue began to fade almost immediately.

Almost five months after her diagnosis, things seemed to be going well.

"She is awake and looking at you," Hemming reported 10 days after surgery. "She's doing well."

But there was a problem.

Doctors found a blood clot. They weren't sure the new liver was getting enough blood. Only days after coming off the transplant list, Hailey was back on.

"We're optimistic this one is going to be okay," Hemming said in August. "But it does not rule out a retransplant."

The news hit the family hard.

"So we're back to square one again," Hailey's grandmother, Gail Helton of Port Richey, said in August. "It was like bricks off my shoulder. I haven't seen my child white. This child was like a bar of Dial soap, you know, that gold."

The setback sapped Warren's strength.

"I told her, "Hang on. Don't let go,"' Warren said. "She was amazing. She did not want to die."

"Stuff to forget about: Swollen eyes ... skinny ribs, yellow eyes ... tube feeding, yellow skin, sleepy, desperate eyes, dry skin and that HUGE, hard swollen belly."

- A page near the end of Hailey's scrapbook

She made it. The liver came, faster than the first. The second transplant operation on Aug. 22 went well, and liver No. 2 seems to be working normally.

Hailey's skin is back to normal. The long reddish scar that arcs across her belly is healed and doesn't bother her anymore.

Adrienne and Joe Warren, both 22, brought their daughter, now 11 months old, home to a small, one-bedroom apartment in Dunedin on Nov. 8.

Joe Warren works nights as a pizza store manager. Adrienne Warren can't go back to work for at least a year. Hailey needs full-time care.

Hailey's 2-year-old brother, Alex, knows not to sneeze on his little sister. He washes his hands often. An infection could be lethal.

Warren lost track of Hailey's medical bills but figures they must be in the hundreds of thousands of dollars. Medicaid will pay the bills until Hailey is 18.

Hailey has gained a pound and a half since she came home. She weighs 13 pounds, a few pounds shy of an average 11-month-old's weight. She is catching up fast on all the basic baby things she missed. She has mastered rolling over and sitting up, things her swollen belly and hospital tubes kept her from doing for the past six months.

Hailey will need to take antirejection drugs for the rest of her life. Warren uses a two-page chart to keep track of Hailey's medications.

On Nov. 19, Hailey developed a high fever. Warren rushed her back to Shands. She was released three days later.

Mother and daughter will be back in Gainesville for a checkup next week. And the next. And so on.

It's not quite a normal life. But it will do.

"You don't really deal with it; you kind of go through it," Warren said. "I never think, "If she dies. ...' I always think she is going to make it."

[Last modified November 29, 2005, 12:32:39]