Five-month-old Rayne Riggleman giggles as she sits on her mother's lap, her blue eyes locked on the shiny skull ring on the hand of her father, who strokes her cheek affectionately.

"People who see her fall in love with her big blue eyes and chipmunk cheeks," said her mother, Andrea Capsuto, 46, of Camarillo. "She's so smart, she loves to watch everything and everybody."

But Rayne's happy nature is in stark contrast to her jaundiced eyes, yellow skin and basketball-sized belly that are symptoms of the rare liver condition biliary atresia she was born with, in which the ducts or tubes that drain bile from the liver are not formed correctly, her pediatrician said.

"The first doctor we took her to three times with concerns about her herniated belly button — and her eyes had a yellow discharge and her abdomen was distended — he kept telling us that her belly button could be repaired when she was 4 or 5 years old, that this was typical and we should flush her eyes with warm water," Capsuto said. "After the third time, we got a second opinion."

She took Rayne to Dr. Lawrence Spinner, a pediatrician who has practiced in Thousand Oaks for 18 years. He said he was concerned that the baby, then 3 months old, had yellow eyes.

"It's common to see jaundice in the infant age group, but it usually resolves itself in a few weeks," Spinner said.

He had Rayne's blood work done and recommended Rayne to Childrens Hospital Los Angeles because of the results.

"I've been in practice 20 years and only seen this twice," Spinner said. "There are varying degrees of severity if it's not surgically treated."

Procedure was unsuccessful

Dr. Ronald J. Sokol, chief of pediatric gastroenterology, hepatology and nutrition at The Children's Hospital in Aurora, Colo., said biliary atresia affects one in 13,000 live births in the U.S. and said there are 300 to 400 new cases each year.

Sokol said research is being done, but the cause of biliary atresia is still unknown.

"Seventy to 80 percent of children (with biliary atresia) eventually need a liver transplant, and 50 percent need a liver transplant by the time they are 2 years old," said Sokol, who was speaking in general terms and has no specific knowledge of Rayne's case.

At Childrens Hospital Los Angeles, Rayne underwent the Kasai Procedure — designed to restore the normal connection between her liver and her small intestine — but the procedure was unsuccessful, and the buildup of bile damaged her liver beyond repair.

"When the surgery didn't take and they said she needed a liver transplant, everyone's hearts hit rock bottom," said Kimberly Capsuto, 24, one of Rayne's eight half-siblings.

Rayne can accept a transplant only from someone with Type O blood, which her siblings and parents do not have. She is on a nationwide donor list to receive a liver transplant, Andrea Capsuto said.

The donor must meet certain criteria — such as being free from psychiatric illness and other medical conditions requiring medication, not being a smoker or heavy drinker, not expecting payment for the donation and being 18 to 60 — to be considered for the operation, according to Childrens Hospital Los Angeles.

'It's a waiting game'

Only a portion of the donor's liver is needed for the transplant, and the donor's liver will grow back to almost full size within six to eight weeks while the donated portion will grow with Rayne.

Sokol said people who want to donate organs should tell their families and register with the state. In California, this can be done through the Department of Motor Vehicles.

In the meantime, as a result of her liver problems, Rayne has been to the hospital several times because of an enlarged spleen, a distended abdomen and the removal of her gallbladder.

"It's a waiting game, and it panics you," said Kimberly Capsuto, a resident of Port Hueneme. "Time is of the essence."

Even if Rayne undergoes transplant surgery, she will likely be on medication for the rest of her life to ensure her body does not reject the liver, Sokol said.

Andrea Capsuto said Rayne's surgery is covered by Medi-Cal but said the family started a medical fund for associated costs such as diapers, transportation and unpaid days off work when they need to rush Rayne to the hospital because of related complications.

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