ATLANTA (FOX 5 Atlanta) - Children's Healthcare of Atlanta liver specialist Dr. Saul Karpen remembers feeling Julia Navarro's tiny abdomen and knowing what she and her parents were facing. Karpen chose his words careful back in November of 2017.
"I try to give small enough bits of information because I think the totality of it is just so hard," Dr. Karpen says. "But, I think they got it wonderfully, and said, 'Okay, what do we do?'"
Analy and Jose Navarro's baby was born in August of 2017 and she was so tiny, weighing just 5 pounds. As the weeks passed, Julia wasn't gaining weight like other newborns. And, there was something else.
"She had this weird coloration to her skin," Analy Navarro says. "It was like a dark green tan, almost. It just wouldn't go away."
Within days, the Navarros knew why their baby was so jaundiced. Julia was diagnosed with biliary atresia, or BA, a liver disease that affects 1 out of every 10,000 babies.
"And even though it sounds rare, it's the number one reason for any child to need a liver transplant worldwide," Dr. Karpen says.
The earlier you can diagnose biliary atresia, Karpen says, the more treatment options you have. At 4 months, Julia was too old to undergo a Kasai procedure that might help her avoid a transplant.
"That's when we found out that she was going to eventually need a transplant," Anayl Navarro remembers. "I was like, 'Can I be a donor?' And they said, 'Well, ideally, we want a deceased donor, but we'll get you tested if that's your plan B.'"
Surgeons wanted to give Julia time to grow stronger.
"But, the hard part is the infants can get very sick," Dr. Karpen says.
That's what happened to Julia.
By Christmas of 2017, her Julia's belly had begun to swell with fluid, a sign her liver was failing. By mid-January of 2018, she was placed on a waiting list for a deceased donor liver. A month later, the Navarros' baby was admitted to CHOA with internal bleeding and other complications. Her tiny liver was shutting down quickly.
Overnight, "Plan B" overnight became "Plan A." Doctor at Emory University Hospital rushed to complete Anayl Navarro's liver donor evaluation.
"When they confirmed I was a match for her, I felt like I could breathe," she says.
On March 26th, 2018, Children's Healthcare of Atlanta raised its transplant flag for Julia Navarro. Surgeons took a piece of Analy's liver and gave it to her 7- month old.
Dr. Karpen says the surgery has a 90 percent success rate. Julia's new liver with grow as she grows, and her mother's will regenerate. Biliary atresia, he says, will not come back. But there is so much, Karpen says, they don't know about this disease.
"The gap is that, for our number one disease, what causes it, and How do we intervene," he asks.
To help researchers find answers, Analy and other biliary atresia mothers she met during Julia's treatment, came up with an idea. In January of 2019, they created the "BA Hero Fund," raising research money that has already led to a promising breakthrough. Dr. Karpen and his team have identified a gene he says may be the cause of BA in some children.
"So, I'm happy to say that maybe we are starting to clear away the grime from thewindow, and will see something, and then start to get a handle on what's the cause, and also some new targets for therapeutic intervention," Dr. Karpen says
For Analy and Jose, and for Julia -- now one year out from her liver transplant, the BA Hero Fund is a way of saying "thank you" for their second chance.
"Because you're helping babies, and you're helping other families," Analy Navarro says. "You're saving lives."
To learn more about the BA Hero Fund, visit baherofund.org.