VB baby in the fight for her life

VIRGINIA BEACH, Va. - When she was born, Carlee Calabrese looked picture perfect.

But after just five weeks at home with Mom, Dad and big sister Avery, a check up brought a reality check. Doctors were concerned with Carlee's yellow coloring.

"That's pretty much where it all started," said Emma Fuller, Carlee's mother. "The jaundice never went away, and it actually got worse."

For months, doctors drew blood, so much it didn't seem like it could all come from one baby.

"She was just getting every little test she could possibly get to figure out what was wrong," said Fuller.

The diagnosis came from Dr. Vita Goei at Children's Hospital of the King's Daughters. Dr. Goei explained Carlee suffers from Bile Salt Export Pump deficiency, or BSEP.

To put it simply, bile accumulates in Carlee's liver. It's toxic and, over time, causes the liver to fail. Dr. Goei said  Carlee is the first patient in Hampton Roads to have it. In a study spanning across the world and 35 years, Goei said only 84 others have reported the same condition. There's one way to keep Carlee alive.

"When we first heard the word liver transplant, both of us broke down right in the doctor's office crying," said Fuller. "That's something I never would have thought would happen to me, or to us, to our child."

Twenty-four hours a day a tube runs from Carlee's nose to her stomach. At night, it hooks up to a feeding bag. It's also how Fuller gives Carlee her medicine.

Every morning, Carlee's mother rips the piece of tape off Carlee's cheek to put on a new piece. It's the one reminder their baby is 'different.'

"When I go to the store, people look at her and you can tell they're looking at that, wondering why it's there," said Fuller.

The family makes monthly trips to Washington, D.C. for testing at the closest pediatric transplant center. The goal is to find Carlee a match.

"I do have my days when it does get the best of me," said Fuller. "I do think about it, but we just have to think positive. She'll be alright."

If all goes well, a scar across her ribs will be the only reminder of all the pain. Carlee will not think of the tubes, or the surgeries, or the looks from strangers.

Instead, she will learn to walk. She will grow like the rest of them. Fuller would give anything to see her baby girl achieve 'normal.'

"Graduate high school, go to college, get married, have kids, just do everything that normal kids would be doing," said Fuller. "That's what I hope for her. That's what I want to see, what I think about."

This week, Carlee's family got the bittersweet call they've been waiting for. Sadly, another baby died, meaning there was a liver for Carlee.

Fuller sent WAVY.com pictures of Carlee after the surgery. And while they may look scary, doctors say, Carlee is making a quick recovery.

Carlee could leave the hospital and go to the Ronald McDonald house in Washington, D.C. as early as this weekend.

To learn more about how to become a donor, click here.

To follow Carlee's journey on Facebook, click here.